iCare:	
  
Providing	
  Patient	
  Advocates	
  with	
  an	
  	
  
Integrated	
  Supportive	
  Mobile	
  System	
  
	
  
	
  
By	
  
	
  
	
  
Sogol	
  Assadbeigi	
  
	
  
	
  
	
  
	
  
	
  
	
  
BA,	
  Art	
  and	
  Design	
  
	
  
University	
  of	
  Alberta,	
  2003	
  
	
  
	
  
A	
  THESIS	
  ESSAY	
  SUBMITTED	
  IN	
  PARTIAL,	
  FULFILLMENT	
  
OF	
  THE	
  REQUIREMENT	
  FOR	
  THE	
  DEGREE	
  OF	
  	
  
	
  
MASTERS	
  OF	
  APPLIED	
  ART	
  	
  
in	
  
DESIGN	
  
	
  
	
  
EMILY	
  CARR	
  UNIVERSITY	
  OF	
  ART	
  AND	
  DESIGN	
  
2012	
  
	
  
	
  
©	
  Sogol	
  Assadbeigi,	
  2012	
  	
  

Abstract	
  
	
  
The	
  implementation	
  of	
  restorative	
  design	
  solutions	
  in	
  mobile	
  healthcare	
  is	
  an	
  emerging	
  
field	
  in	
  design	
  practice.	
  There	
  is,	
  however,	
  a	
  significant	
  knowledge	
  deficit	
  in	
  family/	
  
patient-­‐centric	
  designs	
  and	
  systems.	
  This	
  paper	
  describes	
  the	
  importance	
  of	
  implementing	
  
restorative	
  and	
  stress-­‐reducing	
  solutions	
  for	
  patient	
  advocates	
  and	
  caregivers.	
  This	
  
research	
  investigates	
  the	
  potential	
  of	
  a	
  mobile	
  iOS	
  application	
  and	
  the	
  benefits	
  it	
  could	
  have	
  
for	
  families	
  and	
  friends	
  caring	
  for	
  chronically	
  ill	
  patients.	
  The	
  application	
  allows	
  the	
  patient	
  
advocate	
  to	
  input	
  and	
  recover	
  patient	
  health	
  data	
  and	
  provides	
  social	
  support	
  via	
  an	
  
integrated	
  networking	
  platform.	
  The	
  design	
  of	
  the	
  application	
  enables	
  a	
  holistic	
  experience	
  
that	
  draws	
  attention	
  to	
  the	
  often-­‐neglected	
  emotional	
  and	
  social	
  needs	
  of	
  the	
  patient	
  
advocate.	
  Its	
  purpose	
  is	
  to	
  improve	
  health-­‐related	
  outcomes	
  and	
  communication	
  between	
  
patients,	
  caretakers,	
  and	
  care	
  providers.	
  	
  
Empathic	
  and	
  User	
  Experience	
  (UX)	
  design	
  tools	
  are	
  triangulated	
  with	
  mHealth	
  practices	
  in	
  
the	
  development	
  of	
  the	
  platform.	
  Designer	
  John	
  Maeda’s	
  Laws	
  of	
  Simplicity,	
  Nathan	
  
Shedroff’s	
  Experience	
  Design	
  and	
  Donald	
  A.	
  Norman’s	
  Human	
  Centered	
  Design	
  processes	
  
are	
  described	
  in	
  detail	
  as	
  they	
  identify	
  some	
  of	
  the	
  fundamentals	
  of	
  usability,	
  aesthetics,	
  
cognition	
  and	
  interaction	
  with	
  operating	
  systems.	
  Conclusions	
  are	
  drawn	
  from	
  the	
  analysis	
  
of	
  six	
  co-­‐design	
  attendees,	
  thirty	
  semi-­‐structured	
  interviews	
  and	
  three	
  user-­‐testing	
  focus	
  
groups.	
  	
  
	
  
	
  
Keywords	
  
	
  
User	
  Experience	
  Design	
  (UXD),	
  User	
  Centered	
  Design	
  (UCD),	
  Empathic	
  Design,	
  iOS	
  
Application,	
  Mobile	
  eHealth,	
  mHealth,	
  Patient	
  Advocates,	
  Family/Patient	
  Centric	
  Healthcare	
  
Systems,	
  Personal	
  Health	
  Records	
  (PHR),	
  Experience	
  Healthcare	
  Design	
  
	
  

	
  

	
  

	
  

i	
  

Table	
  of	
  Contents	
  
	
  
	
  

Abstract ............................................................................................................................................................................i
Table of Contents .........................................................................................................................................................ii
List of Figures ...............................................................................................................................................................iii
Acknowledgements ....................................................................................................................................................iv
Dedication .......................................................................................................................................................................v

1.0
1.1
1.2
1.3
1.4
1.5

Framing the Design Opportunity
Inspiration ......................................................................................................................................................2
Hypothesis......................................................................................................................................................4
Research Questions ....................................................................................................................................4
Overview .........................................................................................................................................................5
Introduction ..................................................................................................................................................6

2.0
2.1
2.2
2.3
2.4

Summary of Research
Supportive Design Paradigm for Patient Advocates ....................................................................10
mHealth ...........................................................................................................................................................13
Emotions & User Experience .................................................................................................................18
Empathic Design ..........................................................................................................................................20

3.0
3.1
3.2

Methodology
Ethnography & Interviews .....................................................................................................................23
Understanding Users ................................................................................................................................27

4.0

Analysis...........................................................................................................................................................31

5.0
5.1
5.2
5.3

Design Briefs
Tablets & Gestures ......................................................................................................................................34
Clutter Reduction & Simplicity ..............................................................................................................35
Visual Design .................................................................................................................................................37

6.0
Conclusion ................................................................................................................................................... 40
References ....................................................................................................................................................................42
Appendices....................................................................................................................................................................53
Appendix A: Letter of Invitation & Consent..................................................................................... 53
Appendix B: Digital Image and Audio Release Agreement ....................................................... 57

	
  

ii	
  

List	
  of	
  Figures	
  
	
  

Figure 01:

Communication Pattern of a Patient Advocate ………………………………...................6

‹‰—”‡Ͳʹǣ

‘—” ‡•—•‡†–‘ϐ‹†‘”ƒ ‡•• ‡ƒŽ–ŠǦƒ†‡ŽŽ‡••Ǧ‡Žƒ–‡† ˆ‘”ƒ–‹‘ǤǤǤǤǤͳʹ

‹‰—”‡Ͳ͵ǣ

‡” ‡–ƒ‰‡‘ˆ‘„‹Ž‡ –‡”‡–ƒ••ˆ‘”’’•˜‡”•—•‘„‹Ž‡‡„•‹–‡•ǤǤǤǤǤǤǤǤǤǤǤͳ͸

‹‰—”‡ͲͶǣ

‹”‡ˆ”ƒ‡ –‡”ˆƒ ‡š’Ž‘”ƒ–‹‘ǣ‡†‹ ƒ–‹‘ǡƒŽŽ‡”‰‹‡•ǡ‹—‹œƒ–‹‘–‘‘ŽǤǤǤʹͺ

‹‰—”‡Ͳͷǣ

‹”‡ˆ”ƒ‡ –‡”ˆƒ ‡š’Ž‘”ƒ–‹‘ǣ‡‡”‰‡ ›ƒ†‡†‹ ƒŽ ‘–ƒ –•ǥǥǤǤǤǤǤǤǤǤǥʹͻ

‹‰—”‡Ͳ͸ǣ

ʹͲͳʹƒ„Ž‡–ƒŽ‡•–‘ ‹–ͳͲͲ‹ŽŽ‹‘Ǣ‹ƒ†–‘ƒ‡’͸ͲΨƒ”‡–Šƒ”‡ǤǤǥǤǤǤ͵ͷ

‹‰—”‡Ͳ͹ǣ

‘‘†„‘ƒ”† ‘Ž‘”Ƭ–Š‡‡‡š’Ž‘”ƒ–‹‘..........ǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǥǥǥǥǥǥǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤʹͺ

‹‰—”‡Ͳͺǣ

‘–‡ƒ‹‰Žƒ–ˆ‘”ǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǥǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǥǥǥǥǥǥǤǤǤǤǤǤǤǤǤǤǤǤǤ͵ͻ

‹‰—”‡Ͳͻǣ

‘–‡ƒ‹‰ ‡ƒ–—”‡•ǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǥǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǥǥǥǥǥǥǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤ͵ͻ

‹‰—”‡ͳͲǣ

‹Ž‡‹‡™‘†‡ǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǥǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǥǥǥǥǥǥǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤͶͲ

‹‰—”‡ͳͳǣ

—•Š‘–‹ϐ‹ ƒ–‹‘ ‡ƒ–—”‡•ǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǥǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǥǥǥǥǥǥǤǤǤǤͶͲ

‹‰—”‡ͳʹǣ

—•Š‘–‹ϐ‹ ƒ–‹‘ — –‹‘•ǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǥǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǤǥǥǥǥǥǥǤǤǤǤͶͳ

	
  	
  

	
  

iii	
  

Acknowledgements	
  
	
  
My	
  two-­‐year	
  journey	
  researching	
  support	
  systems	
  in	
  healthcare	
  has	
  come	
  to	
  an	
  end.	
  Now,	
  I	
  
find	
  myself	
  sitting	
  in	
  front	
  of	
  my	
  laptop	
  writing	
  acknowledgements,	
  thinking	
  how	
  did	
  I	
  get	
  
here?	
  It	
  would	
  not	
  have	
  been	
  without	
  the	
  kind	
  and	
  caring	
  people	
  supporting	
  me	
  through	
  
this	
  successful	
  trek.	
  	
  
	
  
First,	
  I’d	
  like	
  to	
  thank	
  my	
  parents,	
  Haleh	
  and	
  Nasser,	
  who	
  have	
  inspired	
  me	
  with	
  their	
  pure	
  
hearts	
  to	
  become	
  a	
  better	
  person	
  every	
  day	
  of	
  my	
  life.	
  Thank	
  you	
  for	
  believing	
  in	
  me	
  and	
  for	
  
supporting	
  me	
  with	
  unconditional	
  love.	
  To	
  my	
  sister	
  and	
  brother	
  in-­‐law,	
  Anahita	
  and	
  Robert	
  
thank	
  you	
  for	
  encouraging	
  me	
  to	
  follow	
  my	
  passion	
  and	
  for	
  giving	
  me	
  the	
  best	
  stress-­‐
reliever,	
  little	
  Sophia.	
  
	
  
Thank	
  you	
  to	
  my	
  dear	
  friends	
  Sanaz	
  Farkhad,	
  Atoussa	
  Mahmoudpour,	
  Elnaz	
  Seyednejad	
  and	
  
Leia	
  Gardner	
  for	
  always	
  being	
  there	
  for	
  me.	
  	
  
	
  
Thank	
  you	
  to	
  Rene	
  Van	
  Halm	
  for	
  encouraging	
  me	
  to	
  apply	
  to	
  the	
  Masters	
  of	
  Applied	
  Arts-­‐	
  
Design	
  program	
  at	
  the	
  time	
  that	
  I	
  did.	
  I	
  would	
  not	
  otherwise	
  have	
  met	
  my	
  fellow	
  design	
  
peers,	
  Karen,	
  Marten,	
  Amanda	
  and	
  Anita.	
  We	
  all	
  had	
  “brilliant	
  ideas”	
  and	
  my	
  experience	
  
surely	
  would	
  not	
  have	
  been	
  the	
  same	
  without	
  your	
  reflection	
  and	
  insight	
  into	
  this	
  thesis	
  
project.	
  To	
  the	
  rest	
  of	
  my	
  peers	
  in	
  the	
  MAA	
  program	
  thanks	
  for	
  your	
  friendship.	
  	
  
	
  
To	
  Deborah	
  Shackleton,	
  for	
  pumping	
  my	
  veins	
  with	
  pure	
  design	
  passion.	
  	
  A	
  special	
  thanks	
  to	
  
Dr.	
  Jim	
  O’Grady,	
  Louise	
  St.	
  Pierre,	
  Karolle	
  Wall,	
  Marc	
  Baumgartner,	
  and	
  Chris	
  Hetherington.	
  
Your	
  expertise	
  and	
  academic	
  input	
  has	
  propelled	
  this	
  project	
  to	
  its	
  success.	
  	
  
	
  
Thank	
  you	
  to	
  Lois	
  Klassen,	
  for	
  helping	
  me	
  with	
  Research	
  Ethics	
  Board.	
  	
  	
  
	
  
Special	
  thanks	
  to	
  Blake	
  Mooney	
  for	
  believing	
  in	
  this	
  project	
  and	
  for	
  your	
  professional	
  
insight	
  and	
  support.	
  	
  
	
  
	
  
Thank	
  you	
  to	
  all	
  the	
  individuals	
  who	
  despite	
  your	
  hectic	
  lives	
  took	
  the	
  time	
  to	
  participate	
  in	
  
my	
  research.	
  Thank	
  you	
  for	
  opening	
  your	
  hearts	
  to	
  me	
  and	
  for	
  enriching	
  my	
  project	
  with	
  
your	
  experiences.	
  	
  
	
  
Last	
  but	
  not	
  least	
  my	
  greatest	
  gratitude	
  goes	
  to	
  my	
  supervisor,	
  Jonathan	
  Aitken	
  whom	
  I	
  
share	
  this	
  project	
  with.	
  Thank	
  you	
  for	
  your	
  invaluable	
  guidance	
  and	
  unwavering	
  support.	
  
You	
  knew	
  exactly	
  when	
  to	
  challenge	
  me	
  and	
  when	
  to	
  just	
  let	
  me	
  be.	
  I	
  could	
  not	
  have	
  wished	
  
for	
  a	
  more	
  ideal	
  supervisor	
  for	
  this	
  experience.	
  	
  
	
  

	
  

iv	
  

	
  

to those who always believe in me
	
  

	
  

v	
  

	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  

	
  

1.0	
  Framing	
  the	
  Design	
  Opportunity	
  	
  
	
  

1	
  

1.1	
  Inspiration	
  
	
  
As	
  an	
  industrial	
  designer,	
  I	
  have	
  always	
  been	
  interested	
  in	
  the	
  correlation	
  between	
  design	
  and	
  
cognitive	
  science.	
  To	
  date,	
  I	
  have	
  dedicated	
  much	
  of	
  my	
  professional	
  practice	
  to	
  emphasizing	
  the	
  
interrelation	
  within	
  the	
  clinical	
  manifestations	
  of	
  design	
  in	
  healthcare.	
  My	
  original	
  intention	
  with	
  
this	
  thesis	
  was	
  to	
  transform	
  existing	
  standards	
  of	
  aesthetics	
  in	
  healthcare	
  environments	
  through	
  
ambient	
  experience	
  design.	
  During	
  my	
  ethnographic	
  research,	
  which	
  included	
  semi-­‐structured	
  
interviews	
  with	
  caregivers	
  and	
  families,	
  however,	
  I	
  realized	
  that	
  there	
  were	
  other	
  unmet	
  
psychosocial	
  needs	
  within	
  these	
  groups.	
  I	
  was	
  empathetic	
  to	
  their	
  situations,	
  as	
  I	
  had	
  just	
  overcome	
  
the	
  fear	
  and	
  anxiety	
  of	
  taking	
  care	
  of	
  a	
  loved	
  one	
  myself.	
  When	
  I	
  heard	
  a	
  woman	
  I	
  met	
  during	
  the	
  
early	
  phases	
  of	
  my	
  research	
  describe	
  her	
  experience	
  as	
  a	
  patient	
  advocate,	
  I	
  was	
  inspired	
  to	
  make	
  a	
  
detour	
  in	
  my	
  practice	
  and	
  apply	
  design	
  to	
  support	
  patient	
  advocacy.	
  	
  
	
  
	
  

“My	
  husband	
  was	
  diagnosed	
  with	
  a	
  life	
  threatening	
  disease.	
  Devastated	
  with	
  

the	
  news,	
  I	
  had	
  to	
  be	
  as	
  positive	
  as	
  I	
  could	
  be.	
  The	
  doctor	
  visits	
  started;	
  the	
  treatments	
  
were	
  very	
  intense.	
  A	
  year	
  after	
  the	
  initial	
  diagnosis,	
  the	
  disease	
  had	
  spread	
  and	
  the	
  
treatments	
  were	
  going	
  to	
  be	
  more	
  intense	
  and	
  more	
  frequent.	
  Never	
  mind	
  that	
  I	
  had	
  to	
  
watch	
  the	
  love	
  of	
  my	
  life,	
  the	
  father	
  of	
  my	
  children,	
  deteriorate	
  so	
  fast	
  and	
  so	
  hopelessly	
  
in	
  front	
  of	
  me.	
  Never	
  mind	
  that	
  I	
  had	
  to	
  deal	
  with	
  the	
  fact	
  that	
  he	
  would	
  never	
  walk	
  our	
  
daughter	
  down	
  the	
  aisle	
  or	
  watch	
  our	
  children	
  graduate.	
  I	
  had	
  to	
  take	
  care	
  of	
  my	
  
children,	
  make	
  a	
  living,	
  accompany	
  my	
  husband	
  to	
  treatments,	
  regularly	
  take	
  him	
  to	
  
the	
  emergency	
  room,	
  remember	
  to	
  give	
  him	
  his	
  medication	
  at	
  the	
  right	
  time,	
  and	
  make	
  
adjustments	
  to	
  my	
  own	
  schedule	
  to	
  arrange	
  future	
  doctor	
  visits.	
  I	
  didn’t	
  have	
  a	
  moment	
  
to	
  myself,	
  even	
  at	
  the	
  end	
  of	
  the	
  day,	
  because	
  then	
  I	
  had	
  to	
  report	
  to	
  our	
  family	
  and	
  
friends	
  on	
  his	
  health	
  status.	
  	
  
	
  
Approximately	
  five	
  months	
  after	
  his	
  death,	
  I	
  woke	
  up	
  to	
  see	
  the	
  bright	
  white	
  hospital	
  
ceiling	
  and	
  walls.	
  The	
  doctors	
  were	
  not	
  sure	
  when	
  exactly,	
  but	
  they	
  estimated	
  that	
  two	
  
years	
  previously,	
  I	
  developed	
  what	
  had	
  at	
  that	
  point	
  become	
  stage	
  three	
  breast	
  cancer;	
  
it	
  had	
  already	
  spread	
  to	
  my	
  skin	
  and	
  lymph	
  nodes.	
  I	
  had	
  to	
  save	
  myself	
  for	
  my	
  children.	
  
Losing	
  one	
  parent	
  was	
  enough	
  for	
  them.	
  As	
  a	
  patient	
  advocate,	
  I	
  had	
  not	
  had	
  the	
  
support	
  I	
  required	
  to	
  care	
  for	
  everyone	
  in	
  my	
  family,	
  including	
  myself.	
  Because	
  of	
  	
  the	
  
stress,	
  I	
  had	
  forgotten	
  about	
  myself.	
  Hypothetically	
  speaking,	
  if	
  there	
  were	
  ten	
  elements	
  

	
  

2	
  

that	
  contributed	
  to	
  my	
  stress	
  levels,	
  if	
  even	
  one	
  or	
  two	
  of	
  those	
  elements	
  were	
  taken	
  
away,	
  then	
  perhaps	
  I	
  would	
  have	
  spent	
  more	
  time	
  on	
  myself.	
  Maybe	
  instead	
  of	
  
reminding	
  myself	
  to	
  call	
  his	
  parents	
  or	
  his	
  doctors,	
  I	
  would	
  have	
  been	
  more	
  mindful	
  of	
  
myself	
  and	
  I	
  would	
  have	
  felt	
  that	
  large	
  lump.”	
  
	
  

	
  

	
  —	
  K.	
  Collins,	
  personal	
  communication,	
  September	
  13,	
  2011	
  

	
  	
  

	
  

	
  

	
  

	
  

I	
  investigated	
  the	
  matter	
  further	
  by	
  conducting	
  more	
  interviews	
  and	
  found	
  that	
  family	
  members	
  of	
  
patients	
  and	
  patient	
  advocates	
  were	
  in	
  dire	
  need	
  of	
  a	
  support	
  system	
  to	
  cope	
  with	
  illnesses	
  and	
  
deaths	
  of	
  their	
  loved	
  ones.	
  The	
  transposed	
  interview	
  below	
  illustrates	
  some	
  of	
  the	
  common	
  issues	
  
patient	
  advocates	
  face	
  during	
  their	
  care-­‐providing	
  experience.	
  	
  
	
  
	
  “…	
  I	
  was	
  constantly	
  in	
  and	
  out	
  of	
  the	
  hospitals,	
  accompanying	
  my	
  wife	
  to	
  treatments.	
  I	
  
was	
  mentally	
  and	
  emotionally	
  beat.	
  I	
  was	
  getting	
  little	
  sleep,	
  and	
  felt	
  like	
  I	
  was	
  
constantly	
  on	
  stand-­‐by	
  mode	
  in	
  case	
  of	
  an	
  emergency.	
  I	
  had	
  to	
  use	
  several	
  apps	
  on	
  my	
  
phone	
  and	
  iPad	
  to	
  organize	
  myself:	
  iCal	
  for	
  appointment	
  reminders	
  and	
  medication	
  
alerts;	
  the	
  notepad	
  app	
  to	
  write	
  the	
  allergies,	
  previous	
  medications	
  and	
  general	
  doctors	
  
notes;	
  Pixable	
  to	
  share	
  and	
  document	
  photos	
  I	
  had	
  taken	
  of	
  medicine	
  bottles,	
  forms	
  etc.	
  
I	
  don’t	
  know	
  how,	
  but	
  I	
  somehow	
  managed	
  to	
  make	
  sense	
  of	
  all	
  of	
  these	
  portals.	
  	
  
She	
  was	
  going	
  through	
  chemotherapy,	
  which	
  meant	
  that	
  her	
  body	
  was	
  extra	
  sensitive	
  
to	
  food.	
  I	
  had	
  to	
  spend	
  extensive	
  time	
  finding	
  recipes	
  that	
  didn’t	
  conflict	
  with	
  the	
  chemo.	
  
There	
  were	
  several	
  chat-­‐rooms,	
  forums	
  and	
  online	
  support	
  groups	
  that	
  I	
  would	
  log	
  in	
  
to,	
  hoping	
  I	
  would	
  find	
  someone	
  in	
  the	
  same	
  shoes	
  as	
  me.	
  They	
  were	
  all	
  desktop	
  
websites	
  to	
  say	
  the	
  least.	
  I	
  was	
  less	
  than	
  interested	
  in	
  going	
  on	
  these	
  sites	
  using	
  my	
  iPad	
  
while	
  I	
  was	
  killing	
  time	
  in	
  waiting	
  rooms,	
  and	
  by	
  the	
  time	
  I	
  would	
  get	
  home	
  to	
  do	
  this	
  I	
  
was	
  too	
  exhausted	
  to	
  mine	
  through	
  forums.”	
  	
  
	
  

	
  

	
  

	
  

—E.	
  Kimmet,	
  personal	
  communication,	
  November	
  28,	
  2011	
  

	
  
These	
  stories,	
  along	
  with	
  my	
  own	
  experiences,	
  highlighted	
  a	
  number	
  of	
  issues	
  that	
  patient	
  
advocates	
  face,	
  and	
  persuaded	
  me	
  to	
  consider	
  a	
  practical	
  technical	
  solution	
  to	
  ease	
  their	
  emotional	
  
and	
  social	
  needs,	
  rather	
  than	
  my	
  original	
  concept,	
  which	
  sought	
  to	
  de-­‐stress	
  patient	
  advocates	
  
through	
  environmental	
  psychology	
  design.	
  While	
  work	
  remains	
  to	
  be	
  done	
  on	
  these	
  hospital	
  
environments,	
  the	
  proposal	
  I	
  make	
  in	
  this	
  thesis	
  can	
  help	
  patient	
  advocates	
  with	
  the	
  pressing	
  needs	
  
they	
  describe	
  above.	
  	
  

	
  

3	
  

	
  
1.2	
  Hypothesis	
  
	
  
This	
  thesis	
  project	
  investigates	
  and	
  builds	
  a	
  theoretically	
  informed	
  and	
  empirically	
  grounded	
  
design	
  paradigm	
  for	
  building	
  a	
  communication	
  and	
  care	
  management	
  platform	
  to	
  support	
  patient	
  
advocates	
  of	
  chronically	
  ill	
  patients.	
  
	
  
	
  
	
  
1.3	
  Research	
  Questions	
  
	
  
Can	
  an	
  integrated	
  communication	
  platform	
  help	
  support	
  a	
  patient	
  advocate	
  in	
  providing	
  patient	
  
care?	
  Could	
  it	
  simultaneously	
  improve	
  the	
  patient	
  advocate’s	
  care-­‐providing	
  experience?	
  Can	
  
patient	
  advocate	
  stress	
  be	
  alleviated	
  in	
  the	
  digital	
  healthcare	
  ecosystem	
  through	
  healthcare	
  
experience	
  design	
  and	
  empathic	
  design?	
  How	
  will	
  making	
  an	
  integrated	
  social	
  support	
  and	
  patient	
  
health	
  recording	
  platform	
  benefit	
  the	
  lives	
  of	
  patient	
  advocates?	
  	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  

	
  

4	
  

1.4	
  Overview	
  
	
  
This	
  thesis	
  project	
  includes	
  an	
  investigation	
  of	
  healthcare	
  design	
  support	
  systems.	
  There	
  is	
  a	
  
significant	
  knowledge	
  deficit	
  in	
  design	
  studies	
  on	
  patient	
  advocate-­‐centric	
  healthcare	
  systems.	
  An	
  
increasing	
  number	
  of	
  studies	
  emphasize	
  the	
  critical	
  need	
  to	
  implement	
  stress-­‐reducing	
  support	
  
solutions	
  for	
  patients,	
  physicians,	
  patient	
  advocates	
  and	
  families.	
  Many	
  recent	
  studies	
  in	
  the	
  
humanities	
  and	
  social	
  sciences	
  demonstrate	
  that	
  patient	
  advocates,	
  family	
  and	
  friends	
  play	
  a	
  
significant	
  role	
  in	
  the	
  overall	
  recovery	
  and	
  well	
  being	
  of	
  patients.	
  The	
  main	
  caretaker,	
  i.e.	
  the	
  
patient	
  advocate,	
  needs	
  to	
  be	
  supported	
  within	
  the	
  overall	
  healthcare	
  system	
  in	
  order	
  play	
  their	
  
role	
  holistically	
  and	
  efficiently.	
  Despite	
  these	
  findings,	
  however,	
  academic	
  and	
  practical	
  healthcare	
  
design	
  studies	
  have	
  sidelined	
  the	
  needs	
  of	
  patient	
  advocates.	
  Little	
  attempt	
  has	
  made	
  taken	
  to	
  
alleviate	
  stress	
  associated	
  with	
  logistical,	
  organizational	
  and	
  emotional	
  needs	
  of	
  patient	
  advocates.	
  
This	
  thesis	
  project	
  investigates	
  these	
  emotional	
  and	
  logistical	
  needs,	
  and	
  provides	
  a	
  supportive	
  
design	
  remedy	
  for	
  patient	
  advocates.	
  	
  
	
  

Theoretical	
  design	
  practices,	
  such	
  as	
  human-­‐centered	
  design,	
  user	
  experience	
  design,	
  and	
  

empathic	
  design,	
  are	
  reviewed	
  and	
  summarized	
  in	
  this	
  thesis	
  project.	
  This	
  research	
  was	
  
undertaken	
  in	
  order	
  to	
  better	
  understand	
  the	
  factors	
  that	
  influence	
  the	
  experiences	
  of	
  a	
  patient	
  
advocate.	
  With	
  greater	
  understanding,	
  this	
  project	
  aims	
  to	
  address	
  patient	
  advocate	
  needs,	
  while	
  
contributing	
  academic	
  and	
  practical	
  emphasis	
  to	
  a	
  patient	
  advocate-­‐centric	
  healthcare	
  design	
  
paradigm.	
  A	
  synthesis	
  of	
  ethnographic	
  fieldwork,	
  semi-­‐structured	
  interviews,	
  and	
  co-­‐creation	
  
activities,	
  together	
  with	
  user-­‐testing,	
  quantitative,	
  and	
  qualitative	
  methodologies,	
  are	
  conducted	
  to	
  
validate	
  and	
  analyze	
  the	
  project.	
  	
  
	
  

This	
  thesis	
  project	
  integrates	
  user	
  experience	
  design	
  (UXD)	
  with	
  mobile	
  eHealth	
  with	
  the	
  

goal	
  of	
  creating	
  a	
  solution	
  that	
  will	
  remedy	
  stress	
  experienced	
  by	
  patient	
  advocates.	
  The	
  design	
  of	
  
an	
  iOS	
  application,	
  or	
  app,	
  using	
  a	
  mobile	
  communication	
  platform	
  integrates	
  an	
  easy-­‐to-­‐access	
  
patient	
  health	
  record	
  platform	
  and	
  encourages	
  support	
  networks	
  among	
  patient	
  advocates.	
  By	
  
providing	
  these	
  services	
  through	
  various	
  design	
  practices,	
  the	
  goal	
  of	
  alleviating	
  stress	
  associated	
  
with	
  providing	
  care	
  to	
  an	
  ill	
  loved	
  one	
  may	
  be	
  achieved.	
  	
  
	
  
	
  
	
  
	
  
	
  

	
  

5	
  

1.5	
  Introduction	
  
	
  
	
  

Advocacy	
  is	
  commonly	
  understood	
  as	
  the	
  act	
  of	
  speaking	
  on	
  someone	
  else’s	
  behalf.	
  This	
  has	
  

become	
  a	
  growing	
  terminology	
  in	
  healthcare	
  used	
  to	
  describe	
  the	
  support	
  and	
  promotion	
  of	
  health	
  
provided	
  by	
  patient	
  advocates	
  and	
  they	
  may	
  be	
  individuals	
  or	
  organizations.	
  
In	
  this	
  thesis,	
  I	
  refer	
  to	
  a	
  patient	
  advocate	
  as	
  the	
  main	
  person	
  providing	
  support	
  to	
  a	
  patient	
  outside	
  
of	
  the	
  medical	
  system.	
  This	
  role	
  is	
  frequently	
  filled	
  by	
  a	
  spouse,	
  an	
  adult	
  child,	
  a	
  parent,	
  or	
  a	
  sibling.	
  
A	
  patient	
  advocate	
  helps	
  a	
  loved	
  one	
  to	
  be	
  heard	
  by	
  medical	
  practitioners,	
  ensures	
  their	
  needs	
  
(organizational,	
  emotional	
  and	
  physical)	
  are	
  met,	
  and	
  provides	
  pre-­‐	
  and	
  post-­‐operative	
  long-­‐term	
  
care.	
  Figure	
  1.	
  depicts	
  the	
  communication	
  role	
  between	
  a	
  patient	
  advocate	
  and	
  the	
  surrounding	
  
networks.	
  	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  

	
  

Figure	
  01.	
  Communication	
  pattern	
  of	
  a	
  patient	
  advocate,	
  Sogol	
  Assadbeigi	
  

	
  

	
  
	
  

Some	
  responsibilities	
  that	
  often	
  arise	
  for	
  a	
  patient	
  advocate	
  include	
  gathering	
  patient	
  health	
  

information,	
  organizing	
  health	
  data,	
  making	
  appointments	
  with	
  medical	
  practitioners,	
  and	
  
facilitating	
  decision-­‐making.	
  An	
  advocate	
  may	
  also	
  play	
  a	
  major	
  role	
  in	
  negotiating	
  between	
  a	
  
patient	
  and	
  care	
  providers.	
  The	
  Institute	
  for	
  Family-­‐Centered	
  Health	
  notes	
  that	
  those	
  with	
  chronic	
  

	
  

6	
  

conditions;	
  the	
  individuals	
  who	
  are	
  most	
  dependent	
  on	
  hospital	
  care	
  and	
  the	
  broader	
  health	
  care	
  
system—are	
  also	
  those	
  who	
  are	
  most	
  dependent	
  on	
  families.	
  They	
  provide	
  the	
  major	
  social	
  support	
  
system…	
  [and]	
  the	
  major	
  tie	
  of	
  the	
  patient	
  to	
  the	
  community	
  (Tanner,	
  2009).	
  The	
  research	
  
conducted	
  for	
  this	
  thesis	
  project	
  demonstrates	
  that	
  patient	
  advocates	
  are	
  frequently	
  involved	
  from	
  
the	
  diagnosis	
  and	
  prognosis,	
  to	
  treatments	
  and	
  post-­‐care.	
  	
  
	
  

My	
  research	
  also	
  found	
  that	
  accompanying	
  patients	
  to	
  surgical	
  and	
  non-­‐surgical	
  

procedures,	
  monitoring	
  patient	
  treatments,	
  and	
  anticipating	
  health	
  outcomes	
  can	
  be	
  traumatizing	
  
and	
  emotionally	
  draining	
  for	
  patient	
  advocates.	
  Such	
  intense	
  care-­‐providing	
  experiences	
  require	
  a	
  
patient	
  advocate’s	
  full	
  attention	
  and	
  vitality.	
  Patient	
  advocates	
  often	
  find	
  this	
  time	
  to	
  be	
  hectic	
  and	
  
exhausting,	
  as	
  they	
  attempt	
  to	
  balance	
  their	
  responsibilities	
  toward	
  the	
  patient	
  with	
  being	
  mindful	
  
of	
  their	
  own	
  psychological	
  and	
  physiological	
  health.	
  As	
  one	
  patient	
  advocate	
  noted,	
  “I	
  can’t	
  take	
  
care	
  of	
  my	
  family	
  if	
  I	
  am	
  not	
  in	
  a	
  good	
  state	
  of	
  health	
  myself”	
  (anonymous,	
  personal	
  communication,	
  
May	
  8,	
  2011).	
  The	
  patient	
  advocate	
  juggles	
  many	
  responsibilities	
  between	
  those	
  of	
  their	
  own	
  life	
  
and	
  those	
  of	
  the	
  patient’s.	
  They	
  need	
  to	
  feel	
  unflustered	
  and	
  in	
  control	
  in	
  order	
  to	
  provide	
  efficient	
  
support	
  and	
  care	
  for	
  their	
  loved	
  one.	
  Patient	
  advocates	
  need	
  a	
  strong	
  emotional	
  and	
  mental	
  support	
  
system	
  to	
  carry	
  them	
  through	
  their	
  precarious,	
  stressful,	
  and	
  exhausting	
  experience.	
  It	
  is	
  crucial	
  to	
  
identify	
  the	
  type	
  of	
  supports	
  that	
  patient	
  advocates	
  require,	
  in	
  order	
  to	
  use	
  design	
  as	
  a	
  remedy.	
  My	
  
research	
  indicates	
  that	
  the	
  most	
  significant	
  support	
  patient	
  advocates	
  need	
  is	
  a	
  networking	
  and	
  
patient	
  health	
  record	
  organizing	
  system	
  on	
  a	
  single	
  consolidated	
  platform.	
  	
  
	
  

Stress	
  associated	
  with	
  illness	
  is	
  a	
  documented,	
  pervasive	
  problem	
  for	
  patient	
  advocates,	
  

patients,	
  families,	
  visitors	
  and	
  healthcare	
  workers	
  (Ulrich,	
  2000).	
  Gabor	
  Mate,	
  a	
  Vancouver	
  medical	
  
practitioner	
  and	
  author	
  of	
  When	
  the	
  Body	
  Says	
  No	
  states:	
  
	
  
“The	
  experience	
  of	
  stress	
  has	
  three	
  components.	
  The	
  first	
  is	
  the	
  event,	
  physical	
  or	
  
emotional,	
  that	
  the	
  organism	
  interprets	
  as	
  threatening.	
  This	
  is	
  the	
  stress	
  stimulus,	
  also	
  
called	
  the	
  stressor.	
  The	
  second	
  element	
  is	
  the	
  processing	
  system	
  that	
  experiences	
  and	
  
interprets	
  the	
  meaning	
  of	
  the	
  stressor.	
  In	
  the	
  case	
  of	
  human	
  beings,	
  this	
  processing	
  
system	
  is	
  the	
  nervous	
  system,	
  in	
  particular	
  the	
  brain.	
  The	
  final	
  constituent	
  is	
  the	
  stress	
  
response,	
  which	
  consists	
  of	
  the	
  various	
  physiological	
  and	
  behavioral	
  adjustments	
  made	
  
as	
  a	
  reaction	
  to	
  perceived	
  threat”	
  (Mate,	
  2004	
  p.	
  31)	
  	
  
	
  
Alleviating	
  this	
  type	
  of	
  stress	
  is	
  clinically	
  significant	
  in	
  the	
  healthcare	
  industry,	
  as	
  it	
  has	
  negative	
  
health	
  and	
  behavioral	
  outcomes,	
  especially	
  for	
  the	
  patient.	
  The	
  quality	
  of	
  care	
  provided	
  by	
  medical	
  

	
  

7	
  

personnel	
  and	
  patient	
  advocates	
  is	
  also	
  impacted	
  by	
  this	
  type	
  of	
  stress.	
  Finding	
  a	
  remedy	
  to	
  
alleviate	
  stress	
  for	
  patient	
  advocates,	
  therefore,	
  would	
  help	
  with	
  patient	
  health	
  outcomes	
  and	
  the	
  
overall	
  well-­‐being	
  of	
  the	
  patient	
  advocate.	
  In	
  reviewing	
  research	
  in	
  various	
  disciplines,	
  however,	
  it	
  
was	
  evident	
  that	
  alleviating	
  stress	
  experienced	
  by	
  patient	
  advocates	
  has	
  been	
  sidelined	
  in	
  practical	
  
and	
  academic	
  studies.	
  There	
  is	
  a	
  clear	
  design	
  gap	
  and	
  an	
  opportunity	
  for	
  designers	
  to	
  improve	
  
patient	
  advocate	
  experiences.	
  This	
  thesis	
  project	
  intends	
  to	
  close	
  this	
  gap,	
  while	
  highlighting	
  its	
  
significance,	
  using	
  interaction	
  and	
  human-­‐centered	
  design.	
  	
  
	
  

There	
  is	
  growing	
  emphasis	
  among	
  healthcare	
  designers	
  on	
  developing	
  systems	
  that	
  support	
  

patients	
  and	
  physicians.	
  There	
  are,	
  however,	
  very	
  few	
  designers	
  or	
  researchers	
  focusing	
  on	
  design	
  
that	
  emphasizes	
  and	
  addresses	
  the	
  needs	
  of	
  patient	
  advocates.	
  It	
  is	
  evident	
  that	
  insufficient	
  
supportive	
  design	
  for	
  patient	
  advocates	
  is	
  not	
  due	
  to	
  bad	
  design,	
  but	
  merely	
  due	
  to	
  lack	
  of	
  
awareness	
  of	
  the	
  problem	
  among	
  designers.	
  As	
  the	
  main	
  caretakers	
  and	
  mediators	
  for	
  the	
  patient	
  
and	
  medical	
  personnel,	
  patient	
  advocates	
  are	
  essential	
  to	
  a	
  patient’s	
  psychological	
  and	
  physical	
  
health.	
  Additionally,	
  they	
  are	
  crucial	
  advocates	
  for	
  quality	
  and	
  safety	
  within	
  the	
  healthcare	
  system	
  
(Nurse,	
  Woodcock	
  &	
  Ormsby,	
  2003).	
  Designers	
  who	
  are	
  empathetic	
  to	
  patient	
  advocates’	
  
experiences	
  and	
  emotional	
  needs	
  will	
  be	
  able	
  to	
  fill	
  this	
  much	
  needed	
  design	
  gap,	
  thereby	
  
improving	
  the	
  healthcare	
  system	
  as	
  a	
  whole.	
  	
  
	
   	
  
	
  

	
  

	
  

8	
  

	
  

	
  

2.0	
  Summary	
  of	
  Research	
  	
  

	
  

9	
  

	
  
2.1	
  Supportive	
  Design	
  Paradigm	
  for	
  Patient	
  Advocates	
  

	
  

	
  
“…Technologies	
  can	
  make	
  life	
  easier,	
  can	
  let	
  us	
  touch	
  people	
  we	
  might	
  not	
  otherwise.	
  
You	
  may	
  have	
  a	
  child	
  with	
  a	
  birth	
  defect	
  and	
  be	
  able	
  to	
  get	
  in	
  touch	
  with	
  other	
  parents	
  
and	
  support	
  groups,	
  get	
  medical	
  information,	
  the	
  latest	
  experimental	
  drugs.	
  These	
  
things	
  can	
  profoundly	
  influence	
  life.”	
  	
  
	
  

	
  

	
  

	
  

	
  

	
  

	
  

	
  

	
  

—	
  Steve	
  Jobs	
  (2003)	
  

	
  
	
  
Stress	
  is	
  linked	
  to	
  both	
  physiological	
  and	
  psychological	
  complications.	
  Roger	
  Ulrich,	
  a	
  fellow	
  at	
  the	
  
Center	
  for	
  Health	
  Systems	
  and	
  Design,	
  Texas	
  A	
  &	
  M	
  University,	
  argues,	
  “alleviating	
  patient	
  stress	
  is	
  
a	
  significant	
  clinical	
  goal	
  because	
  stress	
  is	
  both	
  an	
  important	
  negative	
  health	
  outcome	
  in	
  itself	
  and	
  
has	
  a	
  variety	
  of	
  detrimental	
  psychological,	
  physical	
  and	
  behavioral	
  effects	
  that	
  worsen	
  other	
  
outcomes”	
  (2000,	
  p.	
  53).	
  His	
  argument	
  can	
  be	
  extrapolated	
  to	
  patient	
  advocates.	
  His	
  suggested	
  
design	
  criteria	
  can	
  be	
  implemented	
  as	
  guidelines	
  in	
  pursuit	
  of	
  lowering	
  the	
  stress	
  levels	
  of	
  frequent	
  
hospital	
  visitors.	
  	
  
	
  

Ulrich	
  argues	
  that	
  healthcare	
  design	
  needs	
  to	
  focus	
  on	
  patients	
  and	
  families.	
  In	
  order	
  to	
  

tackle	
  this	
  matter,	
  he	
  claims	
  that	
  multidisciplinary	
  theoretical	
  and	
  scientific	
  review	
  needs	
  to	
  be	
  held	
  
in	
  behavioral	
  science.	
  Ulrich’s	
  suggested	
  guidelines	
  for	
  manifesting	
  supportive	
  healthcare	
  
environments	
  are:	
  to	
  foster	
  emotional	
  control;	
  to	
  promote	
  social	
  support;	
  and	
  to	
  provide	
  access	
  to	
  
nature	
  and	
  positive	
  distractions.	
  Although	
  these	
  ideas	
  are	
  based	
  on	
  the	
  physical	
  environment,	
  the	
  
conceptualization	
  of	
  supportive	
  environments	
  may	
  also	
  be	
  employed	
  in	
  digital	
  form.	
  
	
  

Control	
  refers	
  to	
  an	
  individual’s	
  real	
  or	
  perceived	
  ability	
  to	
  influence	
  their	
  situation	
  and	
  to	
  

determine	
  what	
  others	
  do	
  to	
  them.	
  Research	
  indicates	
  that	
  people	
  who	
  feel	
  they	
  have	
  control	
  over	
  
their	
  situation	
  tend	
  to	
  cope	
  better	
  with	
  stress,	
  as	
  opposed	
  to	
  people	
  who	
  lack	
  this	
  feeling	
  of	
  control	
  
(Evans	
  and	
  Cohen,	
  1987).	
  Importantly,	
  a	
  provision	
  of	
  actual	
  or	
  perceived	
  control	
  over	
  stressors	
  
tends	
  to	
  alleviate	
  stress.	
  Healthcare	
  design	
  criteria	
  that	
  enhance	
  feelings	
  of	
  control,	
  therefore,	
  
should	
  also	
  alleviate	
  stress	
  and	
  improve	
  overall	
  well-­‐being	
  outcomes	
  for	
  patient	
  advocates	
  (Ulrich,	
  
2000).	
  In	
  his	
  book,	
  Flow:	
  The	
  Psychology	
  of	
  Optimal	
  Experience	
  (2008),	
  Mihaly	
  Csikszentmihalyi,	
  a	
  
renowned	
  psychologist,	
  demonstrates	
  ways	
  to	
  achieve	
  optimal	
  experience	
  and	
  joy	
  using	
  emotional	
  
control	
  and	
  deep	
  concentration.	
  He	
  claims	
  “a	
  sense	
  of	
  personal	
  control	
  over	
  the	
  situation	
  or	
  
activity”	
  will	
  play	
  a	
  positive	
  role	
  in	
  relaxation	
  (p.	
  72).	
  He	
  goes	
  further,	
  claiming	
  that	
  life	
  is	
  full	
  of	
  

	
  

10	
  

stressors,	
  and	
  that	
  by	
  gaining	
  control	
  of	
  our	
  emotions	
  and	
  even	
  our	
  situation	
  we	
  can	
  systematically	
  
shield	
  ourselves	
  from	
  this	
  stress.	
  
	
  

Examples	
  of	
  goals	
  that	
  might	
  enhance	
  and	
  enable	
  feelings	
  of	
  control	
  for	
  patient	
  advocates	
  

include:	
  providing	
  opportunities	
  for	
  empathy	
  and	
  information	
  gathering	
  via	
  other	
  patient	
  
advocates	
  on	
  a	
  social	
  networking	
  platform;	
  providing	
  patient	
  advocates	
  with	
  patient	
  medical	
  
history	
  data	
  at	
  the	
  right	
  place	
  and	
  at	
  the	
  right	
  time;	
  equipping	
  patient	
  advocates	
  with	
  interactive	
  
self-­‐	
  and	
  patient-­‐management	
  tools;	
  and	
  creating	
  supportive	
  platforms	
  or	
  situations	
  where	
  patient	
  
advocates	
  are	
  able	
  to	
  achieve	
  measurable	
  decreased	
  stress	
  levels	
  and	
  to	
  therefore	
  provide	
  better	
  
care.	
  	
  
	
  

The	
  term	
  social	
  networks	
  has	
  been	
  used	
  to	
  refer	
  to	
  the	
  chain	
  of	
  social	
  relationships	
  that	
  

surround	
  individuals	
  (Glanz,	
  Rimmer	
  and	
  Viswanat,	
  2008).	
  The	
  promotion	
  of	
  social	
  support	
  via	
  
networking	
  is	
  significant	
  for	
  an	
  individual,	
  since	
  its	
  function	
  depends	
  on	
  healthy	
  social	
  
relationships.	
  The	
  term	
  social	
  network	
  refers	
  to	
  a	
  bridge	
  that	
  bonds	
  together	
  people	
  and	
  
communities	
  with	
  similar	
  interests.	
  In	
  the	
  case	
  of	
  patient	
  advocates,	
  this	
  bridge	
  is	
  empathy.	
  
Numerous	
  empirical	
  and	
  theoretical	
  studies	
  indicate	
  that	
  a	
  wide	
  variety	
  of	
  individuals	
  who	
  receive	
  
strong	
  social	
  support	
  generally	
  experience	
  less	
  stress	
  and	
  have	
  better	
  health	
  than	
  those	
  who	
  are	
  
more	
  socially	
  isolated	
  (Glanz,	
  Rimmer	
  and	
  Viswanat,	
  2008).	
  Network	
  members	
  who	
  provide	
  the	
  
most	
  emotional	
  and	
  concrete	
  social	
  support	
  are	
  spouses	
  and	
  family,	
  with	
  “several	
  studies	
  [finding]	
  
that	
  social	
  support	
  from	
  nurses,	
  families	
  and	
  significant	
  others	
  reduces	
  patient	
  stress,	
  improves	
  
patients’	
  physiological	
  outcomes,	
  and	
  has	
  a	
  positive	
  influence	
  on	
  both	
  patients	
  and	
  family	
  
members”	
  (Tarkka	
  et	
  al.,	
  2003,	
  p.	
  20).	
  Several	
  studies	
  have	
  also	
  shown	
  that	
  increased	
  patient-­‐family	
  
or	
  patient	
  advocate	
  interaction	
  as	
  social	
  support	
  improves	
  the	
  overall	
  recovery	
  of	
  patients	
  (Kahn	
  
and	
  Antonucci,	
  1980).	
  Patient	
  advocates	
  themselves	
  also	
  need	
  emotional	
  support,	
  in	
  order	
  to	
  cope	
  
with	
  the	
  tragedy	
  and	
  strain	
  of	
  taking	
  care	
  of	
  a	
  loved	
  one	
  (Tarkka	
  et	
  al,	
  2003).	
  Patient	
  advocates	
  
often	
  have	
  a	
  social	
  support	
  network	
  of	
  family,	
  friends,	
  and	
  even	
  coworkers.	
  	
  
	
  

Patient	
  advocates,	
  however,	
  have	
  limited	
  access	
  to	
  their	
  social	
  support	
  networks	
  of	
  peers	
  

when	
  the	
  patient	
  they	
  are	
  accompanying	
  is	
  hospitalized.	
  This	
  makes	
  it	
  difficult	
  for	
  the	
  patient	
  
advocate	
  to	
  obtain	
  social	
  support.	
  There	
  is	
  an	
  opportunity,	
  however,	
  for	
  patient	
  advocates	
  to	
  use	
  
electronic	
  networks	
  during	
  times	
  where	
  the	
  advocate	
  is	
  waiting	
  for	
  long	
  hours	
  in	
  waiting	
  rooms.	
  As	
  
a	
  result,	
  online	
  social	
  networks	
  are	
  growing	
  in	
  a	
  variety	
  of	
  ways	
  in	
  the	
  healthcare	
  industry.	
  For	
  
example,	
  fifty-­‐nine	
  percent	
  of	
  surveyed	
  Americans	
  receive	
  health-­‐related	
  information	
  online	
  (Jane	
  
Sarasohn-­‐Kahn,	
  2008).	
  (Fig.	
  02)	
  
	
  

	
  

11	
  

	
  
	
  

Percentage of Adults Referencing...

	
  
	
  

Television

	
  

19%

Newspapers/Magazines

	
  
	
  

Relatives/Friends Co-Workers

	
  
	
  
	
  

	
  

	
  

Doctors
On-Line Health Information

	
  

22%
29%
55%
59%

	
  
Figure	
  02:	
  Sources	
  used	
  to	
  find	
  or	
  access	
  health-­‐	
  and	
  wellness-­‐	
  related	
  information	
  in	
  the	
  past	
  twelve	
  months.	
  
iCrossing.	
  January	
  2008.	
  Re-­‐illustrated	
  by	
  Sogol	
  Assadbeigi	
  	
  

	
  
	
  
One	
  reason	
  for	
  this	
  growing	
  trend	
  is	
  the	
  notion	
  that,	
  when	
  faced	
  with	
  a	
  health	
  related	
  situation,	
  
individuals	
  look	
  online	
  for	
  information	
  about	
  a	
  medication	
  or	
  treatment,	
  descriptions	
  of	
  other	
  
people’s	
  experiences,	
  and	
  advice	
  on	
  how	
  to	
  manage	
  the	
  traumatizing	
  situation	
  (Jane	
  Sarasohn-­‐
Kahn,	
  2008).	
  
	
  

One	
  such	
  popular	
  website	
  is	
  Patientslikeme.com,	
  which	
  provides	
  consumers	
  with	
  a	
  

platform	
  to	
  access	
  health-­‐related	
  information,	
  track	
  and	
  document	
  their	
  own	
  health	
  data,	
  and	
  learn	
  
from	
  the	
  real-­‐world	
  experiences	
  of	
  other	
  similar	
  patients.	
  This	
  site	
  is	
  user	
  friendly	
  and	
  popular	
  
among	
  patients,	
  as	
  it	
  enables	
  them	
  to	
  compare	
  their	
  medical	
  conditions	
  using	
  evidence-­‐based	
  data.	
  
Other	
  consumer-­‐generated	
  websites	
  include	
  Medhelp.org,	
  a	
  social	
  networking	
  and	
  tracking	
  
platform	
  specifically	
  for	
  chronic	
  conditions;	
  and	
  FacetoFace.org	
  health,	
  a	
  social	
  network	
  site	
  that	
  
utilizes	
  proprietary	
  algorithms	
  to	
  connect	
  and	
  match	
  people	
  with	
  similar	
  diagnoses.	
  There	
  are	
  also	
  
sites	
  that	
  represent	
  specific	
  health	
  communities	
  such	
  as	
  those	
  for	
  the	
  elderly,	
  Alzheimer’s,	
  multiple	
  
sclerosis	
  (Paul	
  H.	
  Keckley,	
  2010).	
  Jane	
  Sarasohn-­‐Kahn	
  (2008)	
  explains	
  the	
  importance	
  of	
  these	
  
sites:	
  
	
  	
  
	
  
	
  

	
  

12	
  

“Social	
  media	
  on	
  the	
  Internet	
  are	
  empowering,	
  engaging	
  and	
  educating	
  consumers	
  
and	
  providers	
  in	
  health	
  care.	
  This	
  movement,	
  known	
  as	
  Health	
  2.0,	
  can	
  be	
  defined	
  as:	
  
the	
  use	
  of	
  social	
  software	
  and	
  its	
  ability	
  to	
  promote	
  collaboration	
  between	
  patients,	
  
their	
  caregiver,	
  medical	
  professionals,	
  and	
  other	
  stakeholders	
  in	
  health”	
  (authors	
  
emphasis)	
  (p.2).	
  
	
  
These	
  online	
  platforms	
  are	
  quite	
  successful	
  in	
  providing	
  emotional,	
  instrumental,	
  information	
  and	
  
appraisal	
  support	
  to	
  patients	
  and	
  patient	
  advocates.	
  They	
  are	
  usually	
  geared	
  specifically	
  for	
  certain	
  
demographic	
  groups,	
  addressing	
  a	
  specific	
  disease	
  such	
  as	
  cancer	
  or	
  mental	
  illness.	
  Most	
  of	
  the	
  
online	
  social	
  groups	
  geared	
  towards	
  patient	
  advocates	
  are	
  for	
  those	
  providing	
  care	
  to	
  seniors	
  or	
  
aging	
  parents.	
  Social	
  media	
  is	
  indeed	
  empowering	
  and	
  very	
  beneficial	
  in	
  providing	
  support	
  to	
  
patients	
  and	
  patient	
  advocates	
  alike.	
  	
  
	
  
	
  
	
  
	
  
2.2	
  mHealth	
  
	
  
	
  
Undoubtedly,	
  technology	
  has	
  had	
  a	
  massive	
  influence	
  on	
  the	
  health	
  industry.	
  This	
  influence	
  
continues	
  to	
  grow.	
  Electronic	
  health	
  records,	
  electronic	
  medical	
  records	
  and	
  personal	
  health	
  
records	
  (PHR)	
  have	
  received	
  a	
  face-­‐lift,	
  and	
  are	
  available	
  on	
  many	
  new	
  platforms.	
  mHealth,	
  also	
  
referred	
  to	
  as	
  m-­‐health	
  or	
  mobile	
  health,	
  is	
  a	
  term	
  that	
  is	
  used	
  for	
  healthcare	
  supported	
  by	
  mobile	
  
platforms	
  such	
  as	
  smartphones	
  and	
  tablets.	
  mHealth	
  falls	
  under	
  the	
  umbrella	
  of	
  electronic	
  health	
  
(eHealth).	
  Since	
  the	
  1970s,	
  PHRs	
  have	
  become	
  more	
  popular,	
  as	
  the	
  information	
  on	
  these	
  systems	
  is	
  
owned	
  and	
  controlled	
  by	
  patients	
  and	
  caregivers.	
  The	
  PHRs	
  available	
  on	
  the	
  market	
  today	
  provide	
  
different	
  benefits,	
  with	
  many	
  including	
  services	
  that	
  provide	
  health	
  documentation	
  in	
  a	
  timely	
  
manner;	
  reduce	
  communication	
  barriers	
  between	
  the	
  patient,	
  caretakers	
  and	
  care	
  providers;	
  
provide	
  patient	
  access	
  to	
  personal	
  health	
  profiles;	
  and	
  promote	
  self	
  assessment	
  which	
  can	
  lead	
  to	
  
early	
  intervention.	
  The	
  electronic	
  PHR	
  providers,	
  however,	
  struggle	
  to	
  conform	
  to	
  eHealth	
  market	
  
needs.	
  	
  
	
  

Some	
  fundamentals	
  that	
  may	
  facilitate	
  the	
  success	
  of	
  an	
  electronic	
  health	
  record	
  platform	
  

are	
  user	
  privacy	
  controls,	
  comprehensible	
  information	
  architecture,	
  multi-­‐platform	
  

	
  

13	
  

synchronization	
  abilities,	
  and	
  a	
  mobile	
  friendly	
  website	
  design	
  and	
  user	
  interface.	
  	
  
	
  

Google,	
  one	
  of	
  the	
  most	
  innovative	
  companies	
  worldwide,	
  discontinued	
  their	
  “Google	
  

Health”	
  services	
  in	
  early	
  2012.	
  They	
  claimed	
  that	
  it	
  was	
  due	
  to	
  the	
  limited	
  usage	
  in	
  the	
  daily	
  
routines	
  of	
  millions	
  of	
  people	
  (Brown,	
  2011).	
  Why	
  was	
  this	
  program	
  used	
  so	
  little	
  in	
  people’s	
  daily	
  
routines?	
  I	
  believe	
  that	
  this	
  under	
  use	
  and	
  consequent	
  termination	
  may	
  have	
  been	
  due	
  to	
  Google	
  
missing	
  some	
  of	
  the	
  fundamentals	
  mentioned	
  earlier.	
  	
  
	
  

Privacy	
  is	
  always	
  a	
  major	
  concern	
  for	
  PHRs.	
  Google	
  Health	
  promised	
  to	
  put	
  the	
  users	
  in	
  

control	
  of	
  their	
  own	
  health	
  records.	
  Among	
  their	
  policies	
  is	
  the	
  promise	
  never	
  to	
  sell	
  data	
  or	
  make	
  
health	
  information	
  publicly	
  accessible	
  (Google	
  Health	
  privacy,	
  2008).	
  Despite	
  Google	
  Health’s	
  long	
  
disclosure	
  statements	
  and	
  privacy	
  promises,	
  people	
  may	
  have	
  felt	
  uneasy	
  about	
  inputting	
  their	
  
health	
  records	
  on	
  Google,	
  the	
  largest	
  search	
  engine	
  in	
  the	
  world.	
  	
  
	
  

In	
  terms	
  of	
  the	
  comprehensiveness	
  of	
  the	
  Google	
  PHR	
  information	
  architecture,	
  there	
  were	
  

a	
  few	
  major	
  user	
  needs	
  that	
  were	
  overlooked.	
  From	
  user	
  stories,	
  blog	
  entries	
  and	
  focus	
  groups,	
  
Google	
  found	
  that	
  people	
  were	
  looking	
  for	
  tools	
  that	
  coached	
  them	
  through	
  their	
  wellness	
  program.	
  
Google’s	
  bland	
  iconography	
  and	
  taxonomy	
  made	
  it	
  difficult	
  for	
  users	
  to	
  navigate	
  the	
  platform.	
  Users	
  
were	
  asking	
  for	
  easier	
  data-­‐tracking	
  capabilities	
  and	
  more	
  personalization.	
  The	
  official	
  Google	
  blog	
  
stated	
  in	
  early	
  2010	
  that	
  Google	
  realized	
  the	
  necessity	
  of	
  an	
  “easier	
  to	
  use	
  dashboard”	
  that	
  would	
  
meet	
  these	
  user	
  needs.	
  (Google,	
  n.p.)	
  	
  
	
  

From	
  a	
  user	
  experience	
  and	
  information	
  architecture	
  point	
  of	
  view,	
  Google	
  Health’s	
  

improvement	
  and	
  refurbishment	
  attempts,	
  as	
  shown	
  in	
  figures	
  03	
  and	
  04	
  were	
  disappointing	
  to	
  say	
  
the	
  least	
  .	
  The	
  dashboard	
  is	
  filled	
  with	
  data,	
  not	
  information.	
  For	
  data	
  to	
  be	
  useful	
  information,	
  it	
  
has	
  to	
  be	
  organized	
  and	
  well	
  expressed.	
  Richard	
  Saul	
  Wurman	
  describes	
  this	
  in	
  his	
  book,	
  
Information	
  Anxiety	
  (1989)	
  as	
  follows:	
  “Data	
  is	
  fairly	
  worthless	
  to	
  most	
  of	
  us;	
  it	
  is	
  the	
  product	
  of	
  
research	
  or	
  creation	
  (such	
  as	
  writing),	
  but	
  it	
  is	
  not	
  an	
  adequate	
  product	
  for	
  communicating.	
  To	
  have	
  
informational	
  value,	
  it	
  must	
  be	
  organized,	
  transformed,	
  and	
  presented	
  in	
  a	
  way	
  that	
  gives	
  it	
  
meaning”	
  (as	
  cited	
  in	
  Shedroff,	
  1994,	
  p.	
  2-­‐3).	
  	
  
Patients	
  and	
  distressed	
  patient	
  advocates	
  like	
  to	
  enter	
  their	
  data	
  immediately	
  as	
  they	
  receive	
  it,	
  
with	
  minimum	
  delay.	
  By	
  carrying	
  their	
  health	
  records	
  with	
  them	
  to	
  doctor’s	
  offices,	
  hospitals	
  and	
  
clinics,	
  they	
  are	
  able	
  to	
  effectively	
  exchange	
  critical	
  health	
  information	
  with	
  their	
  healthcare	
  
providers.	
  Google	
  Health,	
  much	
  like	
  other	
  online	
  PHRs,	
  was	
  not	
  primarily	
  a	
  mobile	
  application	
  or	
  a	
  
mobile	
  website.	
  This	
  platform	
  asked	
  users	
  to	
  fill	
  in	
  large	
  amounts	
  of	
  health	
  data	
  on	
  a	
  desktop-­‐
optimized	
  website.	
  
	
  	
  

	
  

The	
  interface	
  and	
  information	
  architecture	
  of	
  a	
  website	
  designed	
  specifically	
  for	
  a	
  mobile	
  

14	
  

device	
  attracts	
  users	
  due	
  to	
  its	
  specific	
  and	
  simple	
  navigation	
  process.	
  Yet	
  while	
  health	
  related	
  
mobile	
  apps	
  continue	
  to	
  grow	
  exponentially,	
  as	
  Jacob	
  Nielsen’s	
  2009	
  study	
  on	
  mobile	
  usability	
  
demonstrates,	
  users’	
  success	
  rates	
  when	
  using	
  mobile	
  devices	
  to	
  access	
  non-­‐mobile	
  websites	
  
averaged	
  only	
  64%	
  compared	
  to	
  an	
  80%	
  success	
  rate	
  for	
  users	
  accessing	
  websites	
  on	
  a	
  desktop	
  
computer.	
  Nielson	
  (2009)	
  claims	
  that	
  “users	
  lose	
  interest	
  upon	
  entering	
  a	
  website	
  on	
  a	
  mobile	
  
device	
  that	
  is	
  made	
  for	
  personal	
  computers	
  and	
  is	
  therefore	
  difficult	
  for	
  the	
  user	
  to	
  navigate	
  
through.”	
  In	
  hindsight,	
  Google	
  Health	
  may	
  have	
  been	
  more	
  successful	
  if	
  it	
  had	
  not	
  chosen	
  to	
  provide	
  
its	
  PHR	
  services	
  only	
  via	
  a	
  desktop	
  web	
  application.	
  	
  
	
  

As	
  mentioned	
  earlier	
  mobility	
  plays	
  a	
  significant	
  role	
  in	
  a	
  successful	
  electronic	
  health	
  

record	
  system.	
  The	
  iPad	
  offers	
  a	
  great	
  opportunity	
  for	
  patients	
  and	
  patient	
  advocates	
  to	
  carry	
  their	
  
health	
  records	
  with	
  them	
  to	
  the	
  medical	
  facilities.	
  They	
  are	
  able	
  to	
  review	
  them	
  with	
  their	
  medical	
  
practitioners	
  and	
  make	
  additional	
  recordings.	
  However,	
  this	
  opportunity	
  can	
  only	
  be	
  available	
  if	
  the	
  
device	
  provides	
  this	
  platform	
  effectively.	
  Otherwise	
  it	
  will	
  not	
  be	
  adopted	
  by	
  the	
  consumers	
  and	
  is	
  
short	
  lived.	
  This	
  communication	
  and	
  support	
  system	
  may	
  be	
  available	
  in	
  in	
  two	
  ways,	
  a	
  mobile	
  
website	
  and	
  an	
  app.	
  A	
  native	
  app	
  is	
  generally	
  known	
  to	
  have	
  better	
  marketability	
  than	
  a	
  mobile	
  
website.	
  They	
  generate	
  revenue	
  in	
  several	
  ways	
  such	
  as	
  the	
  subscriber	
  model,	
  the	
  in-­‐app	
  purchase	
  
model,	
  and	
  the	
  in	
  App	
  store	
  purchase	
  model	
  to	
  name	
  a	
  few.	
  For	
  these	
  reasons	
  stakeholders	
  have	
  
geared	
  more	
  towards	
  creating	
  apps	
  which	
  has	
  contributed	
  to	
  its	
  growth.	
  Although	
  a	
  mobile	
  website	
  
has	
  better	
  usability	
  versus	
  a	
  website;	
  an	
  app	
  is	
  yet	
  a	
  better	
  choice	
  if	
  navigation,	
  usability,	
  and	
  
experience	
  is	
  a	
  priority	
  (Fig.	
  5).	
  Furthermore	
  an	
  app	
  that	
  is	
  mainly	
  used	
  for	
  management	
  purposes,	
  
once	
  downloaded,	
  is	
  not	
  limited	
  to	
  Internet	
  connectivity.	
  	
  
	
  
	
  
	
  
	
  

	
  

15	
  

	
  

	
  

Figure	
  03:	
  Percentage	
  of	
  Mobile	
  Internet	
  Tasks	
  for	
  Mobile	
  Apps	
  versus	
  Mobile	
  Websites	
  

	
  
	
  
	
  

In	
  2011,	
  PEW	
  Research	
  Center	
  for	
  the	
  People	
  and	
  the	
  Press,	
  reported	
  that	
  17%	
  of	
  mobile	
  

phone	
  users	
  were	
  using	
  their	
  devices	
  to	
  look	
  up	
  health	
  and	
  medical	
  information.	
  Jupiter	
  Research’s	
  
study	
  on	
  health	
  apps	
  recently	
  estimated	
  that	
  44	
  million	
  health	
  apps	
  were	
  downloaded	
  in	
  2011	
  
(Empson,	
  2012).	
  This	
  popularity	
  is	
  due	
  to	
  the	
  advent	
  and	
  increased	
  use	
  of	
  portable	
  smart	
  digital	
  
devices,	
  such	
  as	
  smartphones	
  and	
  tablets.	
  Rip	
  Empson	
  (2012)	
  notes	
  this	
  key	
  connection	
  between	
  
the	
  new	
  devices	
  and	
  new	
  applications,	
  asserting	
  that	
  “smartphones	
  are	
  connecting	
  with	
  these	
  
diagnostic	
  apps	
  and	
  health-­‐measuring	
  devices	
  to	
  help	
  you	
  stay	
  on	
  top	
  of	
  your	
  health	
  and	
  fitness-­‐like	
  
basics	
  like	
  heart	
  and	
  health	
  tracker,	
  Lark,	
  Fitbit	
  and	
  Jawbone’s	
  UP—to	
  name	
  a	
  few”	
  (Empson,	
  2012,	
  
para.	
  3).	
  The	
  software	
  apps	
  that	
  are	
  being	
  downloaded	
  perform	
  functions	
  that	
  range	
  from	
  tracking	
  

	
  

16	
  

diagnostics	
  to	
  social	
  networking	
  with	
  care	
  providers.	
  Philips’	
  Vital	
  Signs	
  Camera,	
  which	
  measures	
  
vital	
  signs	
  via	
  an	
  iPad	
  camera,	
  is	
  a	
  favorite	
  app	
  among	
  patients	
  (Philips,	
  2004).	
  Mobile	
  devices	
  have	
  
also	
  changed	
  the	
  way	
  physicians	
  communicate	
  diagnosis	
  and	
  treatment	
  procedures,	
  with	
  many	
  
using	
  the	
  iPad	
  as	
  a	
  multimedia	
  platform	
  (Empson,	
  2012).	
  These	
  apps	
  are,	
  for	
  the	
  most	
  part,	
  
designed	
  for	
  physicians,	
  patients	
  and	
  medical	
  staff.	
  	
  
	
  

There	
  is	
  currently	
  one	
  app,	
  called	
  Capzule	
  PHR,	
  on	
  the	
  online	
  Apple	
  store	
  that	
  claims	
  to	
  

provide	
  for	
  the	
  needs	
  of	
  patients,	
  family,	
  friends	
  and	
  caregivers.	
  The	
  app	
  states	
  that	
  it	
  offers	
  a	
  PHR	
  
platform	
  for	
  families	
  and	
  caregivers,	
  while,	
  it	
  does	
  not	
  meet	
  several	
  clear	
  criteria	
  that	
  my	
  research	
  
has	
  identified	
  as	
  key	
  requirements	
  specific	
  to	
  patient	
  advocates,	
  (January,	
  2012).	
  Health	
  and	
  
medical	
  app	
  developers	
  and	
  stakeholders	
  neglect	
  to	
  include	
  families	
  and	
  friends	
  of	
  the	
  patient	
  in	
  
their	
  development	
  and	
  designing	
  of	
  these	
  integrated	
  platforms.	
  When	
  someone	
  is	
  sick,	
  however,	
  
whether	
  it	
  is	
  a	
  simple	
  flu	
  or	
  a	
  chronic	
  illness,	
  there	
  is	
  almost	
  always	
  someone	
  accompanying	
  the	
  
patient.	
  These	
  advocates	
  are	
  evidently	
  sidelined	
  in	
  the	
  development	
  and	
  design	
  of	
  such	
  integrated	
  
platforms.	
  	
  
	
  

Empson	
  raises	
  a	
  good	
  question:	
  “Should	
  the	
  definition	
  of	
  ‘mobile	
  wellness	
  spill	
  over	
  into	
  

how	
  we	
  define	
  ‘mHealth’?	
  How	
  should	
  we	
  differentiate	
  between	
  mHealth	
  and	
  “mMedicine”?	
  The	
  
distinction	
  between	
  these	
  two	
  categories	
  is	
  rooted	
  in	
  who	
  is	
  the	
  intended	
  user	
  of	
  the	
  app.	
  An	
  app	
  
that	
  is	
  designed,	
  programmed	
  and	
  marketed	
  specifically	
  for	
  a	
  physician	
  is,	
  and	
  should	
  be,	
  different	
  
from	
  those	
  designed	
  for	
  a	
  patient	
  or	
  a	
  patient	
  advocate.	
  Not	
  all	
  software	
  applications	
  made	
  for	
  
medical	
  personnel	
  are	
  appropriate	
  for	
  patients	
  or	
  their	
  patient	
  advocates.	
  The	
  same	
  can	
  be	
  said	
  for	
  
applications	
  that	
  are	
  made	
  for	
  patients—they	
  are	
  not	
  ideal	
  apps	
  for	
  their	
  caregivers	
  or	
  families.	
  In	
  
the	
  iOS	
  Human	
  Interface	
  Guidelines,	
  the	
  authors	
  and	
  creators	
  talk	
  extensively	
  about	
  the	
  importance	
  
of	
  user	
  experience	
  design	
  and	
  user	
  centered	
  design:	
  “A	
  great	
  user	
  interface	
  follows	
  human	
  interface	
  
design	
  principles	
  that	
  are	
  based	
  on	
  the	
  way	
  people—users—think	
  and	
  work,	
  not	
  on	
  the	
  capabilities	
  
of	
  the	
  device”	
  (iOS	
  HIG,	
  Human	
  Interface	
  Principles	
  Section,	
  2012,	
  para.	
  1).	
  If	
  user	
  experience	
  
designers	
  are	
  creating	
  these	
  apps	
  with	
  their	
  users	
  in	
  mind,	
  then	
  these	
  user	
  boundaries	
  should	
  be	
  
clear.	
  While	
  a	
  patient	
  advocate	
  may	
  find	
  an	
  app	
  designed	
  for	
  a	
  medical	
  professional	
  or	
  patient	
  
useful,	
  for	
  those	
  apps	
  to	
  claim	
  that	
  they	
  are	
  designed	
  for	
  patient	
  advocates,	
  while	
  neglecting	
  the	
  
specific	
  needs	
  of	
  those	
  patient	
  advocates,	
  is	
  dishonest.	
  
	
  

The	
  question	
  still	
  remains:	
  if	
  these	
  apps	
  aren’t	
  meeting	
  patient	
  advocate	
  needs,	
  why	
  are	
  

they	
  still	
  being	
  used	
  by	
  a	
  wide	
  variety	
  of	
  users?	
  Is	
  it	
  because	
  their	
  specific	
  needs	
  are	
  not	
  fully	
  met	
  by	
  
the	
  apps	
  available	
  to	
  them	
  on	
  the	
  market?	
  With	
  no	
  app	
  on	
  the	
  market	
  specifically	
  designed	
  for	
  
patient	
  advocates,	
  other	
  apps	
  within	
  the	
  mHealth	
  and	
  mMediciene	
  category	
  are	
  downloaded—apps	
  

	
  

17	
  

that	
  do	
  not	
  target	
  the	
  specific	
  needs	
  of	
  patient	
  advocates.	
  A	
  successful	
  design	
  will	
  depend	
  upon	
  the	
  
ability	
  to	
  look	
  deeper	
  into	
  the	
  experiences	
  and	
  emotions	
  of	
  patient	
  advocates	
  in	
  order	
  to	
  meet	
  their	
  
needs.	
  The	
  efficient	
  use	
  of	
  experience	
  design	
  and	
  human	
  centered	
  design	
  (HCD)	
  practices	
  will	
  be	
  
discussed	
  in	
  further	
  detail	
  in	
  the	
  next	
  section.	
  	
  
	
  	
  
	
  
	
  
	
  
	
  
	
  
2.3	
  Emotion	
  and	
  User	
  Experience	
  
	
  
“…	
  experiences	
  should,	
  ultimately,	
  change	
  and	
  modify	
  themselves	
  to	
  be	
  more	
  
appropriate	
  for	
  users”.	
  	
   	
  

	
  

	
  

	
  

	
  	
  

	
  

	
  

—Nathan	
  Shedroff	
  (2001,	
  p.	
  116)	
  

	
  

	
  

	
  

	
  

	
  

	
  

	
  

	
  
	
  
User	
  experience	
  design,	
  also	
  known	
  as	
  UXD,	
  is	
  the	
  study	
  of	
  the	
  interactions	
  between	
  people	
  and	
  
products,	
  and	
  the	
  way	
  people	
  feel	
  while	
  using	
  those	
  products—in	
  other	
  words,	
  their	
  experiences.	
  
Donald	
  Norman,	
  a	
  cognitive	
  science	
  researcher	
  and	
  author	
  of	
  The	
  Design	
  of	
  Everyday	
  Things	
  (1988),	
  
claims	
  that	
  the	
  way	
  the	
  product	
  is	
  perceived,	
  learned	
  and	
  used	
  are	
  all	
  aspects	
  of	
  user	
  experience	
  
design.	
  UXD	
  draws	
  from	
  multidisciplinary	
  roots,	
  and	
  reaches	
  into	
  human-­‐centered	
  design.	
  It	
  plays	
  a	
  
significant	
  role	
  in	
  software	
  development,	
  especially	
  for	
  haptic	
  device	
  interfaces	
  where	
  information	
  
architecture	
  and	
  hand	
  gestures	
  are	
  key	
  to	
  the	
  experience	
  of	
  the	
  user.	
  Haptic,	
  or	
  touch	
  screen,	
  
smartphones	
  and	
  tablets	
  have	
  immersive	
  and	
  interactive	
  interfaces.	
  Users	
  of	
  such	
  devices	
  are	
  
generally	
  intrigued	
  by	
  them,	
  due	
  to	
  their	
  high	
  stimulation	
  and	
  interactivity.	
  	
  
	
  

In	
  his	
  book,	
  The	
  Psychology	
  of	
  Everyday	
  Things	
  (1988),	
  Norman	
  provides	
  a	
  connection	
  

between	
  product	
  design	
  and	
  UXD.	
  He	
  triangulates	
  the	
  basics	
  of	
  experimental	
  psychology	
  and	
  
cognitive	
  science	
  with	
  design.	
  The	
  usability	
  of	
  any	
  product	
  is	
  reliant	
  on	
  design	
  that	
  is	
  centered	
  on	
  
human	
  physical	
  and	
  cognitive	
  capabilities—in	
  other	
  words,	
  human-­‐centered	
  design.	
  	
  
	
  

Both	
  human-­‐centered	
  design	
  and	
  user	
  experience	
  design	
  depend	
  on	
  the	
  consideration	
  of	
  

the	
  user’s	
  behavior	
  and	
  emotions	
  during	
  the	
  design	
  process.	
  Experience	
  designers	
  depend	
  heavily	
  
on	
  cognitive	
  models	
  to	
  better	
  understand	
  the	
  users	
  they	
  design	
  for.	
  Three	
  of	
  those	
  models	
  are	
  

	
  

18	
  

discussed	
  below.	
  They	
  examine	
  experience	
  from	
  different	
  perspectives,	
  including	
  product-­‐centered	
  
models,	
  user-­‐centered	
  models,	
  and	
  interaction-­‐centered	
  models.	
  The	
  latter	
  two	
  models	
  have	
  
become	
  underlying	
  processes	
  in	
  designing	
  apps	
  for	
  complex	
  mental	
  models,	
  such	
  as	
  those	
  of	
  patient	
  
advocates.	
  User-­‐centered	
  models	
  help	
  developers	
  and	
  designers	
  to	
  better	
  understand	
  the	
  users	
  
they	
  are	
  designing	
  for.	
  Marc	
  Hassenzahl,	
  for	
  example,	
  provides	
  “a	
  theoretical	
  model	
  to	
  describe	
  
people’s	
  goals	
  and	
  actions	
  when	
  interacting	
  with	
  products.	
  It	
  broadens	
  traditional	
  goal-­‐	
  and	
  task-­‐
based	
  thinking	
  to	
  include	
  fun	
  and	
  action-­‐oriented	
  models	
  of	
  behavior”	
  (2003,	
  p.	
  39).	
  Interaction-­‐
centered	
  models	
  investigate	
  ways	
  a	
  product	
  connects	
  designers	
  and	
  users.	
  Here	
  it	
  is	
  useful	
  to	
  define	
  
user	
  behavior	
  and	
  the	
  role	
  of	
  emotion	
  in	
  experience.	
  
	
  

Designing	
  a	
  user	
  experience	
  for	
  a	
  distressed	
  and	
  fatigued	
  patient	
  advocate	
  is	
  complex.	
  

Experience	
  design	
  expert	
  Nathan	
  Shedroff	
  (2001)	
  talks	
  about	
  creating	
  cognitive	
  models	
  in	
  
experiences:	
  “The	
  most	
  important	
  aspect	
  of	
  any	
  design	
  is	
  how	
  it	
  is	
  understood	
  in	
  the	
  minds	
  of	
  the	
  
audience.”	
  No	
  matter	
  what	
  the	
  user’s	
  competence	
  level	
  and	
  type	
  of	
  understanding,	
  the	
  experience	
  
they	
  walk	
  away	
  with	
  is	
  always	
  re-­‐interpreted	
  by	
  the	
  user.	
  Shedroff	
  (2001)	
  suggests	
  to	
  designers	
  
that	
  “whether	
  or	
  not	
  you	
  focus	
  on	
  creating	
  a	
  cognitive	
  model	
  for	
  your	
  experience,	
  your	
  participants	
  
will	
  nonetheless”.	
  
	
  
	
  

During	
  traumatizing	
  times,	
  when	
  a	
  loved	
  one	
  is	
  chronically	
  ill	
  or	
  is	
  hospitalized,	
  the	
  patient	
  

advocate’s	
  stress,	
  anxiety	
  and	
  fatigue	
  levels	
  tend	
  to	
  be	
  high.	
  To	
  propose	
  a	
  type	
  of	
  PHR	
  platform	
  that	
  
helps	
  patient	
  advocates	
  organize	
  health	
  information	
  and	
  gain	
  social	
  support	
  solves	
  only	
  part	
  of	
  the	
  
problem.	
  The	
  experience	
  of	
  such	
  distressed	
  consumers	
  in	
  using	
  an	
  application	
  can	
  be	
  a	
  significant,	
  
pivotal	
  point	
  not	
  only	
  with	
  regard	
  to	
  their	
  experience	
  in	
  using	
  the	
  application,	
  but	
  also	
  in	
  their	
  
overall	
  experience	
  as	
  a	
  patient	
  advocate.	
  	
  
	
  

A	
  UX	
  designer	
  also	
  needs	
  to	
  consider	
  how	
  the	
  patient	
  advocate’s	
  association	
  with	
  the	
  

system	
  might	
  change	
  over	
  time.	
  Their	
  initial	
  interaction	
  needs	
  to	
  enable	
  easily	
  obtained	
  fluency,	
  “to	
  
ensure	
  that	
  they	
  will	
  continue	
  to	
  use	
  the	
  product	
  and	
  not	
  abandon	
  it	
  in	
  frustration”	
  (Forlizzi	
  and	
  
Battarbee,	
  2004	
  p.	
  265).	
  The	
  user	
  should	
  need	
  to	
  invest	
  little	
  time	
  in	
  figuring	
  out	
  the	
  functions,	
  
controls,	
  tabs	
  and	
  gestures,	
  and	
  should	
  be	
  able	
  instead	
  to	
  spend	
  their	
  time	
  browsing	
  through	
  the	
  
benefits	
  the	
  app	
  provides.	
  The	
  browsing	
  and	
  navigation	
  experience	
  should	
  be	
  seamless,	
  last	
  longer,	
  
and	
  support	
  the	
  user.	
  As	
  John	
  Maeda	
  declares	
  in	
  his	
  final	
  and	
  most	
  important	
  law	
  of	
  simplicity,	
  
“simplicity	
  is	
  about	
  subtracting	
  the	
  obvious,	
  and	
  adding	
  the	
  meaningful”	
  (p.	
  89).	
  This	
  simple	
  
process	
  of	
  elimination	
  enables	
  the	
  users	
  to	
  walk	
  away	
  with	
  valuable	
  experiences.	
  	
  
	
  

	
  

19	
  

	
  
	
  
2.4	
  Empathic	
  Design	
  
	
  
“Every	
  journey	
  to	
  a	
  great	
  user	
  experience	
  starts	
  when	
  someone	
  empathizes	
  with	
  a	
  user	
  in	
  a	
  way	
  that	
  is	
  
authentic,	
  human,	
  and	
  compelling.”	
  	
  
	
  

	
  

	
  

	
  

	
  

	
  

	
  

—Tim	
  Kieschnick	
  (2011,	
  HxD	
  Conference)	
  	
  

	
  
	
  
In	
  order	
  to	
  create	
  positive	
  emotions	
  in	
  users,	
  there	
  is	
  a	
  need	
  for	
  designers	
  to	
  deeply	
  understand	
  the	
  
context	
  in	
  which	
  users	
  are	
  situated	
  (Hassenzahl,	
  2004).	
  As	
  a	
  result	
  of	
  this	
  awareness,	
  new	
  design	
  
approaches	
  such	
  as	
  empathic	
  design	
  have	
  gained	
  much	
  support	
  in	
  the	
  design	
  realm.	
  Through	
  a	
  
strategic	
  empathic	
  design	
  approach,	
  it	
  is	
  possible	
  to	
  promote	
  positive	
  cognitive	
  experiences	
  for	
  
patient	
  advocates.	
  	
  
	
  

The	
  empathic	
  design	
  approach	
  is	
  not	
  a	
  new	
  concept.	
  In	
  fact,	
  it	
  has	
  been	
  evident	
  in	
  design	
  

thinking	
  and	
  design	
  processes	
  for	
  years.	
  Donald	
  Norman’s	
  plenary	
  analysis	
  of	
  The	
  Design	
  and	
  
Psychology	
  of	
  Everyday	
  Things	
  (1988)	
  knits	
  empathic	
  design	
  into	
  the	
  core	
  of	
  user-­‐centered	
  design	
  
approach.	
  This	
  approach	
  has	
  been	
  adopted	
  in	
  several	
  industries	
  such	
  as	
  business,	
  marketing,	
  and	
  
especially	
  in	
  healthcare	
  design.	
  	
  
	
  

Through	
  observing	
  and	
  deep	
  listening,	
  healthcare	
  designers	
  in	
  all	
  disciplines	
  can	
  grasp	
  a	
  

deeper	
  level	
  of	
  the	
  hurting,	
  the	
  caring,	
  and	
  the	
  healing	
  of	
  those	
  whose	
  lives	
  have	
  been	
  changed	
  due	
  
to	
  the	
  illness	
  of	
  a	
  loved	
  one.	
  What	
  is	
  the	
  experience	
  of	
  someone	
  taking	
  care	
  of	
  a	
  cancer	
  patient?	
  How	
  
many	
  hours	
  do	
  patient	
  advocates	
  spend	
  in	
  oncology	
  units?	
  What	
  do	
  they	
  do	
  during	
  this	
  time?	
  
Where	
  or	
  who	
  do	
  they	
  turn	
  to	
  in	
  order	
  to	
  rejuvenate	
  and	
  gain	
  strength?	
  How	
  do	
  they	
  cope	
  with	
  a	
  
loved	
  one’s	
  health	
  deteriorating?	
  How	
  about	
  their	
  own	
  lives,	
  their	
  full-­‐time	
  jobs,	
  their	
  mental	
  and	
  
physical	
  wellbeing,	
  their	
  networks?	
  Through	
  the	
  empathic	
  design	
  process,	
  user	
  stories	
  are	
  
gathered,	
  which	
  yield	
  product	
  innovation	
  and	
  new	
  design	
  opportunities.	
  	
  
	
  

Leonard	
  and	
  Rayport	
  (1997)	
  have	
  identified	
  five	
  underlying	
  steps	
  to	
  facilitate	
  the	
  empathic	
  

design	
  process.	
  These	
  steps	
  provide	
  designers	
  with	
  a	
  lens	
  through	
  which	
  to	
  see	
  the	
  personal	
  
experiences	
  and	
  lives	
  of	
  the	
  consumers	
  they	
  are	
  designing	
  for.	
  The	
  steps	
  are:	
  observation,	
  capturing	
  
data,	
  reflection	
  and	
  analysis,	
  brainstorming	
  for	
  solutions,	
  and	
  developing	
  prototypes	
  of	
  possible	
  
solutions	
  (Leonard	
  and	
  Rayport,	
  1997).	
  	
  
	
  

	
  

Empathic	
  design	
  thinking	
  is	
  especially	
  vital	
  in	
  enhancing	
  social	
  support	
  systems	
  in	
  

20	
  

healthcare.	
  Health	
  education	
  interventions	
  have	
  attempted	
  to	
  enhance	
  the	
  social	
  support	
  available	
  
to	
  participants	
  by	
  linking	
  them	
  with	
  professional	
  helpers.	
  Professional	
  helpers,	
  however,	
  are	
  rarely	
  
available	
  to	
  provide	
  social	
  support	
  over	
  long	
  periods	
  of	
  time,	
  especially	
  online,	
  and	
  are	
  costly.	
  
Additionally,	
  professionals	
  are	
  not	
  typically	
  reciprocal	
  and	
  lack	
  the	
  empathic	
  understanding	
  that	
  
other	
  patient	
  advocates	
  in	
  similar	
  situations	
  may	
  have.	
  Hence,	
  a	
  supportive	
  communication	
  
platform	
  that	
  brings	
  similar	
  patient	
  advocates	
  together	
  could	
  be	
  one	
  remedy	
  possible	
  for	
  this	
  
design	
  gap.	
  	
  
	
  

Healthcare,	
  and	
  in	
  particular	
  mHealth,	
  has	
  sidelined	
  patient	
  advocates	
  as	
  participants	
  in	
  a	
  

patient’s	
  recovery.	
  The	
  reason	
  underpinning	
  this	
  neglect	
  could	
  be	
  that	
  design,	
  business,	
  cognitive	
  
science,	
  and	
  other	
  disciplines	
  are	
  spending	
  their	
  energy	
  on	
  enhancing	
  patient-­‐centric	
  healthcare	
  
systems.	
  Disciplines	
  that	
  are	
  passionate	
  about	
  providing	
  care	
  have	
  the	
  opportunity	
  to	
  widen	
  the	
  
scope	
  of	
  what	
  they	
  consider	
  factors	
  in	
  patients’	
  lives	
  and	
  wellbeing,	
  and	
  could	
  come	
  to	
  realize	
  that	
  
the	
  families	
  who	
  support	
  patients	
  during	
  these	
  times	
  are	
  a	
  major	
  keystone	
  of	
  the	
  system.	
  	
  
	
  

	
  

	
  

21	
  

	
  
	
  
	
  

	
  
	
  

3.0	
  Methodology	
  	
  

	
  

22	
  

This	
  thesis	
  project	
  has	
  a	
  bi-­‐fold	
  empathic	
  design	
  opportunity.	
  First,	
  my	
  own	
  experience	
  as	
  a	
  patient	
  
advocate	
  gives	
  me	
  insight	
  into	
  the	
  experience	
  of	
  those	
  I	
  am	
  designing	
  for;	
  second,	
  as	
  a	
  designer	
  and	
  
a	
  Certified	
  Aging	
  in	
  Place	
  Specialist,	
  I	
  have	
  been	
  able	
  to	
  use	
  therapeutic	
  communication	
  skills	
  to	
  
connect	
  with	
  the	
  patient	
  advocates	
  during	
  interviews	
  and	
  focus	
  groups.	
  	
  
In	
  order	
  to	
  understand	
  the	
  precise	
  needs	
  of	
  patient	
  advocates	
  and	
  to	
  implement	
  the	
  best	
  design	
  
approaches,	
  research	
  using	
  qualitative	
  and	
  quantitative	
  methodologies	
  was	
  conducted.	
  Co-­‐creation	
  
activities,	
  as	
  well	
  as	
  other	
  research	
  tools,	
  were	
  designed	
  to	
  assess	
  and	
  understand	
  patient	
  
advocates’	
  social,	
  emotional	
  and	
  behavioral	
  needs.	
  Ethnographic	
  fieldwork,	
  thirty	
  semi-­‐structured	
  
interviews	
  and	
  two	
  focus	
  groups	
  were	
  conducted.	
  After	
  the	
  fieldwork,	
  interviews	
  and	
  test	
  period,	
  
the	
  diaries	
  and	
  tapes	
  were	
  analyzed.	
  Low	
  fidelity	
  mock-­‐ups,	
  along	
  with	
  working	
  prototypes,	
  were	
  
designed	
  and	
  tested	
  during	
  three	
  user-­‐testing	
  sessions.	
  Overall,	
  empathic	
  design	
  criteria	
  were	
  built	
  
up	
  through	
  the	
  extensive	
  review	
  of	
  the	
  research	
  conducted.	
  
	
  
	
  
	
  
3.1	
  Ethnography	
  and	
  Interviews	
  	
  
	
  
	
  
The	
  foundation	
  of	
  empathic	
  design	
  is	
  observation	
  (Burns,	
  2010).	
  Watching	
  patient	
  advocates	
  
provides	
  a	
  deeper	
  understanding	
  of	
  their	
  social,	
  emotional	
  and	
  behavioral	
  needs.	
  The	
  research	
  
methodology	
  used	
  for	
  the	
  purpose	
  of	
  this	
  thesis	
  project	
  examined	
  health	
  and	
  design	
  in	
  the	
  context	
  
of	
  family-­‐centric	
  healthcare;	
  in	
  particular,	
  it	
  examines	
  how	
  experience	
  healthcare	
  design	
  can	
  have	
  a	
  
positive	
  effect	
  on	
  communication	
  and	
  support	
  patterns.	
  Various	
  healthcare	
  institutions	
  in	
  
Vancouver,	
  British	
  Columbia	
  were	
  visited,	
  and	
  ethnographic	
  field	
  research	
  was	
  conducted	
  over	
  the	
  
course	
  of	
  a	
  month	
  at	
  Bogen	
  Hospital	
  in	
  Bogen,	
  Germany.	
  Several	
  weeks	
  were	
  spent	
  at	
  these	
  various	
  
locations.	
  The	
  facilities	
  were	
  studied	
  from	
  a	
  visitor’s	
  point	
  of	
  view.	
  	
  
	
  
Lions	
  Gate	
  	
  
Lions	
  Gate	
  Hospital	
  was	
  the	
  primary	
  institution	
  where	
  ethnographic	
  research	
  was	
  conducted	
  in	
  
North	
  Vancouver.	
  The	
  hospital	
  was	
  built	
  in	
  the	
  1970s	
  and	
  has	
  a	
  culturally	
  diverse	
  environment.	
  
Social	
  interaction	
  between	
  families,	
  patients	
  and	
  medical	
  personnel	
  within	
  the	
  lobby,	
  waiting	
  rooms	
  
and	
  gathering	
  spaces	
  was	
  observed.	
  During	
  the	
  months	
  of	
  April	
  and	
  June	
  of	
  2011,	
  the	
  traffic	
  flow	
  
and	
  use	
  of	
  social	
  spaces	
  was	
  monitored.	
  The	
  observation	
  was	
  conducted	
  by	
  shadowing	
  the	
  

	
  

23	
  

volunteers,	
  sitting	
  in	
  social	
  spaces	
  and	
  closely	
  observing	
  the	
  naturally	
  occurring	
  events.	
  During	
  this	
  
time,	
  it	
  was	
  noted	
  that	
  the	
  hospital	
  visitors,	
  friends	
  and	
  family	
  of	
  the	
  patients	
  were	
  spending	
  several	
  
hours	
  in	
  the	
  social	
  gathering	
  spaces,	
  such	
  the	
  cafeteria,	
  coffee	
  shop,	
  waiting	
  rooms	
  and	
  lobby.	
  
Forms	
  of	
  entertainment	
  engaged	
  in	
  by	
  these	
  visitors	
  were	
  particularly	
  noteworthy.	
  The	
  majority	
  of	
  
the	
  hospital	
  visitors	
  passed	
  time	
  reading	
  a	
  magazine,	
  making	
  phone	
  calls,	
  and	
  working	
  on	
  their	
  
tablets	
  and	
  smartphones.	
  Some	
  visitors	
  made	
  notes	
  on	
  note	
  pads	
  and	
  others	
  mined	
  through	
  apps	
  
and	
  websites	
  on	
  their	
  tablets.	
  	
  
	
  

Semi-­‐structured	
  interviews	
  and	
  conversations	
  with	
  hospital	
  volunteers	
  and	
  staff	
  were	
  held	
  

and	
  later	
  transcribed	
  and	
  analyzed.	
  During	
  these	
  conversations,	
  I	
  was	
  told	
  that	
  there	
  were	
  a	
  
significant	
  number	
  of	
  patient	
  advocates	
  and	
  families	
  wandering	
  the	
  halls	
  of	
  hospitals	
  aimlessly,	
  
even	
  though	
  they	
  had	
  very	
  busy	
  lives.	
  Way-­‐finder	
  volunteers	
  were	
  typically	
  asked	
  if	
  there	
  was	
  a	
  
computer	
  that	
  visitors	
  could	
  access,	
  or	
  where	
  the	
  nearest	
  internet	
  café	
  was.	
  Within	
  the	
  last	
  few	
  
years,	
  hospital	
  volunteers	
  had	
  received	
  more	
  complaints	
  regarding	
  Wi-­‐Fi	
  connectivity	
  and	
  IT	
  
related	
  issues	
  from	
  hospital	
  visitors.	
  	
  
	
  
Bogen,	
  Germany	
  
After	
  several	
  months	
  of	
  observing	
  social	
  behavior	
  of	
  families	
  accompanying	
  patients	
  in	
  hospitals	
  in	
  
Vancouver,	
  unique	
  circumstances	
  enabled	
  me	
  to	
  go	
  to	
  Bogen,	
  Germany.	
  My	
  sister	
  had	
  been	
  
diagnosed	
  with	
  a	
  collapsed	
  spine,	
  and	
  artificial	
  disk	
  replacement	
  surgery	
  was	
  recommended.	
  Bogen	
  
Hospital	
  had	
  very	
  friendly	
  and	
  accommodating	
  nursing	
  staff.	
  I	
  felt	
  emotionally	
  and	
  mentally	
  
supported	
  by	
  them.	
  Despite	
  this,	
  I	
  was	
  exhausted,	
  nervous,	
  and	
  anxious.	
  I	
  had	
  to	
  keep	
  these	
  
dramatically	
  changing	
  emotions	
  under	
  control,	
  however,	
  in	
  order	
  to	
  maintain	
  focus	
  and	
  to	
  provide	
  
better	
  care	
  as	
  a	
  patient	
  advocate	
  for	
  my	
  sister.	
  	
  
	
  

My	
  sister’s	
  operation	
  day	
  came,	
  and	
  so	
  did	
  an	
  overwhelming	
  number	
  of	
  phone	
  calls	
  and	
  

emails	
  from	
  our	
  extended	
  family	
  and	
  social	
  networks.	
  Repeating	
  information	
  by	
  phone	
  and	
  email	
  to	
  
each	
  of	
  our	
  family	
  members	
  was	
  one	
  of	
  the	
  biggest	
  challenges	
  for	
  me.	
  It	
  was	
  not	
  something	
  that	
  I	
  
could	
  overlook,	
  however,	
  as	
  reporting	
  the	
  status	
  of	
  my	
  sister	
  was	
  a	
  significant	
  reason	
  why	
  I	
  was	
  
accompanying	
  her.	
  	
  
	
  

After	
  speaking	
  with	
  other	
  patient	
  advocates	
  in	
  the	
  hospital	
  in	
  several	
  different	
  wards,	
  I	
  

concluded	
  that	
  this	
  challenge	
  was	
  common	
  among	
  all	
  twenty-­‐three	
  patient	
  advocates	
  that	
  I	
  spoke	
  
with.	
  A	
  mitigating	
  solution	
  suggested	
  by	
  some	
  patient	
  advocates	
  was	
  emailing	
  or	
  using	
  a	
  social	
  
network	
  site	
  such	
  as	
  Facebook	
  or	
  Twitter.	
  The	
  common	
  consensus	
  among	
  patient	
  advocates,	
  
however,	
  was	
  that	
  these	
  	
  general	
  social	
  networking	
  sites	
  are	
  too	
  open	
  to	
  extended	
  social	
  networks	
  

	
  

24	
  

and	
  have	
  a	
  certain	
  negative	
  connotation	
  to	
  them	
  regarding	
  privacy.	
  	
  
	
  

This	
  experience	
  suggested	
  new	
  design	
  opportunities.	
  How	
  could	
  I	
  provide	
  heath	
  status	
  

updates	
  at	
  once,	
  in	
  order	
  to	
  avoid	
  the	
  overwhelming	
  phone	
  calls	
  and	
  emails?	
  Was	
  there	
  a	
  
communication	
  system	
  available,	
  other	
  than	
  general	
  social	
  networking	
  sites	
  such	
  as	
  Facebook	
  and	
  
Twitter?	
  
	
  

After	
  further	
  investigation	
  into	
  the	
  lives	
  of	
  the	
  patient	
  advocates	
  at	
  the	
  hospital,	
  I	
  

interviewed	
  a	
  pastor.	
  I	
  had	
  observed	
  him	
  go	
  from	
  room	
  to	
  room,	
  visiting	
  the	
  patients	
  and	
  family	
  
members	
  every	
  day	
  for	
  a	
  week.	
  In	
  a	
  brief	
  interview,	
  he	
  stated	
  that	
  patients	
  with	
  social	
  support	
  
recovered	
  faster,	
  because	
  of	
  their	
  sense	
  of	
  affiliation	
  and	
  belonging.	
  	
  
	
  

While	
  family	
  members	
  were	
  supporting	
  the	
  patients,	
  the	
  pastor	
  was	
  supporting	
  those	
  

family	
  members.	
  Families	
  were	
  calmer	
  after	
  speaking	
  with	
  the	
  pastor.	
  They	
  declared	
  that	
  he	
  
provided	
  emotional	
  support	
  and	
  a	
  sense	
  of	
  control	
  by	
  providing	
  sympathetic	
  communication	
  skills.	
  
This	
  therapeutic	
  communication	
  strategy	
  reduced	
  family	
  members’	
  stress,	
  which	
  led	
  to	
  fewer	
  
complaints	
  to	
  hospital	
  staff	
  and	
  care	
  providers.	
  He	
  also	
  introduced	
  families	
  who	
  shared	
  rooms	
  and	
  
were	
  in	
  the	
  same	
  ward	
  together,	
  creating	
  temporary	
  communities.	
  Patient	
  advocates	
  and	
  families	
  
felt	
  more	
  welcomed,	
  supported	
  and	
  satisfied	
  with	
  their	
  experience	
  at	
  the	
  hospital	
  because	
  of	
  this.	
  
On	
  several	
  occasions,	
  I	
  was	
  invited	
  to	
  roundtable	
  meetings	
  held	
  by	
  the	
  pastor	
  in	
  the	
  hospital’s	
  
common	
  area	
  specifically	
  for	
  the	
  families	
  of	
  patients.	
  My	
  observation	
  of	
  the	
  roles	
  the	
  pastor	
  played	
  
in	
  this	
  hospital	
  revealed	
  further	
  design	
  opportunities,	
  as	
  it	
  highlighted	
  the	
  importance	
  of	
  providing	
  
a	
  social	
  networking	
  platform	
  for	
  patient	
  advocates	
  in	
  similar	
  situations	
  to	
  meet	
  based	
  on	
  common	
  
interests	
  and	
  concerns.	
  Such	
  a	
  platform	
  would	
  enable	
  the	
  exchange	
  of	
  experiences	
  and	
  health	
  
information	
  among	
  patient	
  advocates.	
  	
  
	
  
Interviews	
  
	
  

Upon	
  the	
  completion	
  of	
  the	
  observational	
  field	
  studies	
  at	
  Bogen	
  hospital,	
  I	
  reached	
  out	
  to	
  

families	
  with	
  chronically	
  ill	
  loved	
  ones.	
  Some	
  of	
  the	
  patients	
  they	
  were	
  caring	
  for	
  were	
  hospitalized,	
  
while	
  others	
  had	
  regular	
  weekly	
  treatments.	
  During	
  various	
  phone	
  conversations	
  and	
  personal	
  
interviews,	
  the	
  patient	
  advocates’	
  journeys	
  and	
  compelling	
  stories	
  were	
  collected.	
  The	
  stories	
  had	
  
notable	
  measures	
  of	
  emotional	
  highs	
  and	
  lows.	
  Below	
  are	
  some	
  of	
  the	
  responses	
  gathered	
  when	
  
patients’	
  family	
  members	
  were	
  asked:	
  “what	
  was	
  the	
  biggest	
  struggle	
  in	
  your	
  care-­‐providing	
  
experience?”	
  
	
  
	
  

	
  

25	
  

“I	
  have	
  been	
  taking	
  care	
  of	
  my	
  sister	
  all	
  of	
  my	
  life.	
  It	
  has	
  been	
  a	
  difficult	
  journey.	
  There	
  
are	
  days	
  that	
  I	
  juggle	
  up	
  to	
  three	
  events	
  at	
  one	
  time.	
  You	
  can	
  never	
  get	
  used	
  to	
  it.”	
  	
  
	
  	
  
	
  	
  

	
  

	
  	
  	
  	
  	
  	
  	
  	
  

	
  (Anonymous,	
  personal	
  communication,	
  September	
  22,	
  2011)	
  

	
  
“What	
  are	
  my	
  worries?	
  There	
  are	
  a	
  few,	
  where	
  do	
  I	
  start?	
  I	
  stay	
  up	
  some	
  nights	
  trying	
  
to	
  remember	
  if	
  I	
  gave	
  my	
  father	
  the	
  corresponding	
  dosage	
  of	
  his	
  prescriptions.	
  I	
  have	
  
saved	
  all	
  the	
  pharmacy	
  prescription	
  papers	
  in	
  a	
  handy	
  file	
  in	
  case	
  there	
  is	
  an	
  incident	
  
and	
  I	
  need	
  to	
  be	
  reminded	
  of	
  the	
  side	
  effects.	
  ”	
  	
  
	
  

	
  

	
  

	
  	
  	
  	
  	
  	
  	
  	
  

(T.	
  Schmolick,	
  personal	
  communication,	
  September	
  12,	
  2011)	
  

	
  
“I	
  have	
  an	
  iphone,	
  and	
  the	
  worst	
  is	
  when	
  I	
  need	
  to	
  make	
  a	
  quick	
  emergency	
  phone	
  call	
  
to	
  a	
  doctor,	
  I	
  have	
  to	
  go	
  through	
  my	
  entire	
  contact	
  list	
  to	
  find	
  his	
  name.	
  It’s	
  not	
  difficult	
  
to	
  find	
  the	
  name,	
  but	
  when	
  you	
  are	
  trembling	
  and	
  under	
  severe	
  stress,	
  your	
  mind	
  plays	
  
tricks	
  on	
  you.”	
  	
   	
  
	
  	
  

	
  

	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  	
   	
  (Anonymous,	
  personal	
  communication,	
  November	
  8,	
  2011)	
  

	
  
“The	
  emergency	
  room	
  doctors	
  ask	
  me	
  what	
  drug	
  allergies	
  she	
  has.	
  To	
  this	
  date	
  I	
  have	
  a	
  
hard	
  time	
  remembering	
  all	
  of	
  them	
  as	
  they	
  change	
  all	
  the	
  time.	
  I	
  always	
  carry	
  an	
  
updated	
  list	
  and	
  carry	
  it	
  in	
  my	
  wallet.”	
  	
  
	
  

	
  

	
  

	
  	
  	
  	
  	
  	
  	
  	
  	
  	
  

	
  	
  	
  (Anonymous,	
  personal	
  communication,	
  November	
  8,	
  2011)	
  

	
  
“After	
  spending	
  all	
  day	
  by	
  your	
  partner’s	
  side	
  who	
  is	
  going	
  through	
  chemotherapy,	
  the	
  
last	
  thing	
  you	
  want	
  to	
  do	
  when	
  you	
  get	
  home	
  is	
  make	
  endless	
  phone	
  calls	
  to	
  family	
  and	
  
friends	
  telling	
  them	
  how	
  it	
  went.	
  Not	
  answering	
  the	
  calls	
  and	
  text	
  messages	
  is	
  not	
  an	
  
option	
  either,	
  because	
  that	
  just	
  multiplies	
  the	
  calls	
  until	
  you	
  answer.”	
  	
  
	
  

	
  

	
  

	
  

	
  	
  	
  	
  	
  	
  	
  

(P.	
  Duck,	
  personal	
  communication,	
  December	
  5,	
  2011)	
  

	
  

	
  

	
  

	
  

	
  

	
  

	
  

These	
  user	
  stories	
  were	
  valuable	
  for	
  understanding	
  the	
  experiences	
  and	
  needs	
  of	
  patient	
  advocates.	
  
Further	
  qualitative	
  and	
  quantitative	
  assessment,	
  however,	
  was	
  necessary.	
  Methods	
  such	
  as	
  focus	
  
groups	
  and	
  co-­‐creation	
  activities	
  were	
  used	
  to	
  holistically	
  investigate	
  aspects	
  of	
  supportive	
  design.	
  	
  
	
  
	
  

	
  

26	
  

	
  
3.2	
  Understanding	
  Users	
  
	
  
	
  
Focus	
  Groups:	
  First	
  Session	
  
The	
  user	
  stories	
  collected	
  indicated	
  a	
  design	
  direction	
  for	
  the	
  thesis	
  project.	
  To	
  explore	
  this	
  
opportunity	
  further,	
  two	
  focus	
  groups	
  consisting	
  of	
  three	
  participants	
  each	
  were	
  established.	
  The	
  
participants	
  were	
  patient	
  advocates	
  and	
  medical	
  personnel	
  who	
  were	
  invited	
  to	
  share	
  their	
  stories,	
  
experiences	
  and	
  to	
  produce	
  emotional	
  maps.	
  These	
  maps	
  were	
  then	
  shared	
  and	
  discussed	
  in	
  detail	
  
within	
  the	
  group.	
  	
  
	
  

The	
  patient	
  advocates	
  had	
  comparable,	
  if	
  not	
  identical,	
  support	
  needs.	
  These	
  needs	
  included	
  

a	
  portable	
  digital	
  organizer	
  that	
  would	
  help	
  with	
  the	
  process	
  of	
  setting	
  appointments,	
  medication	
  
reminders,	
  emergency	
  contacts,	
  history	
  of	
  episodes,	
  allergy	
  records,	
  and	
  image	
  storage	
  on	
  a	
  single	
  
platform.	
  	
  
	
  

Notably,	
  the	
  requirements	
  included	
  a	
  communication	
  platform	
  where	
  patient	
  advocates	
  

could	
  update	
  the	
  status	
  of	
  the	
  patients’	
  well	
  being,	
  which	
  selected	
  networks	
  could	
  access.	
  This	
  
service	
  would	
  enable	
  the	
  families	
  and	
  other	
  network	
  members	
  to	
  be	
  notified	
  of	
  a	
  patient’s	
  well	
  
being	
  without	
  intensive	
  patient	
  advocate	
  contact.	
  With	
  this	
  capability,	
  patient	
  advocates	
  would	
  be	
  
relieved	
  of	
  the	
  responsibility	
  of	
  answering	
  numerous	
  phone	
  calls	
  and	
  emails.	
  	
  
	
  

Another	
  finding	
  from	
  the	
  focus	
  groups	
  was	
  the	
  need	
  of	
  patient	
  advocates	
  to	
  connect	
  with	
  

other	
  patient	
  advocates	
  experiencing	
  similar	
  traumatic	
  events.	
  Strikingly,	
  there	
  were	
  strong	
  
feelings	
  of	
  disappointment	
  among	
  patient	
  advocates	
  regarding	
  the	
  lack	
  of	
  online	
  support	
  platforms	
  
specifically	
  for	
  patient	
  advocates.	
  The	
  participants	
  claimed	
  that	
  existing	
  support	
  groups	
  were	
  not	
  
dynamic	
  enough,	
  and	
  that	
  finding	
  a	
  mobile-­‐friendly	
  social	
  support	
  group	
  for	
  patient	
  advocates	
  was	
  
very	
  difficult.	
  	
  
	
  

A	
  website	
  named	
  carebridge.com	
  was	
  well	
  known	
  and	
  referred	
  to	
  within	
  the	
  group.	
  This	
  

website	
  connects	
  people	
  experiencing	
  a	
  significant	
  health	
  challenge	
  to	
  family	
  and	
  friends.	
  In	
  pursuit	
  
to	
  making	
  each	
  care	
  providing	
  experience	
  easier	
  it	
  offers	
  personal	
  and	
  private	
  space	
  to	
  
communicate	
  and	
  show	
  support,	
  saving	
  time	
  and	
  emotional	
  energy	
  when	
  health	
  matters	
  most.	
  It	
  
enables	
  users	
  to	
  create	
  a	
  personalized	
  website.	
  Authors	
  add	
  health	
  updates	
  and	
  photos	
  to	
  share	
  
their	
  story	
  while	
  visitors	
  leave	
  messages	
  of	
  love,	
  hope	
  and	
  compassion	
  in	
  the	
  guestbook.	
  
(carebridge.org)	
  The	
  participants	
  of	
  my	
  focus	
  group	
  explained,	
  however,	
  there	
  is	
  some	
  time	
  
required	
  to	
  make	
  the	
  webpage,	
  personalize	
  it,	
  add	
  contacts,	
  and	
  finally	
  learn	
  the	
  navigation.	
  Patient	
  

	
  

27	
  

advocates	
  would	
  have	
  considered	
  using	
  the	
  site’s	
  services	
  while	
  they	
  were	
  passing	
  time	
  in	
  waiting	
  
rooms,	
  but	
  the	
  site	
  is	
  not	
  mobile	
  friendly.	
  By	
  the	
  time	
  patient	
  advocates	
  arrive	
  home	
  or	
  at	
  their	
  
desktop	
  computers,	
  it	
  is	
  highly	
  unlikely	
  that	
  they	
  will	
  use	
  the	
  site,	
  as	
  they	
  are	
  exhausted.	
  	
  
	
  

	
  

Focus	
  Groups:	
  Second	
  Session	
  
Upon	
  the	
  completion	
  of	
  the	
  first	
  experience,	
  focus	
  group	
  meeting	
  information	
  architecture	
  tools	
  
were	
  implemented,	
  including	
  static	
  and	
  interactive	
  wireframes,	
  content	
  maps,	
  user	
  decision	
  trees	
  
and	
  informational	
  taxonomies.	
  The	
  tools	
  were	
  then	
  consolidated	
  into	
  a	
  single	
  interactive	
  low-­‐
fidelity	
  mock-­‐up	
  of	
  a	
  tablet-­‐based	
  app.	
  In	
  the	
  second	
  focus	
  group,	
  meeting	
  participants	
  were	
  
presented	
  with	
  the	
  mock-­‐up,	
  and	
  were	
  asked	
  to	
  provide	
  feedback	
  on	
  the	
  proposed	
  services,	
  which	
  
aimed	
  to	
  meet	
  the	
  needs	
  of	
  patient	
  advocates	
  (fig.	
  6	
  and	
  7).	
  	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  

	
  

Figure	
  04:	
  Wireframe	
  interface	
  exploration:	
  medication,	
  allergies,	
  immunization	
  tool	
  

	
  
	
  
	
  
	
  

	
  

28	
  

	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  

	
  

Figure	
  05:	
  Wireframe	
  interface	
  exploration:	
  emergency	
  and	
  medical	
  contacts	
  	
  

	
  
	
  
	
  

By	
  the	
  end	
  of	
  the	
  meeting,	
  a	
  hierarchy	
  of	
  services	
  was	
  identified,	
  labeled,	
  integrated	
  and	
  

prioritized.	
  The	
  hierarchy	
  of	
  services	
  and	
  tools	
  to	
  be	
  provided	
  by	
  the	
  proposed	
  app	
  were:	
  a	
  patient	
  
status	
  update	
  platform	
  for	
  chosen	
  network	
  members,	
  a	
  connection	
  opportunity	
  with	
  other	
  patient	
  
advocates	
  dealing	
  with	
  similar	
  experiences,	
  a	
  designated	
  emergency	
  and	
  medical	
  practitioners	
  
contact	
  information	
  list,	
  a	
  health	
  information	
  collection	
  system	
  including	
  a	
  past	
  and	
  current	
  
medication	
  list	
  with	
  side-­‐effects,	
  an	
  appointment	
  and	
  medication	
  notification	
  system,	
  image	
  
uploading	
  capabilities,	
  and	
  an	
  allergies	
  list.	
  These	
  functions	
  and	
  tools	
  may	
  alleviate	
  the	
  stress	
  that	
  
accompanies	
  a	
  mentally	
  exhausting	
  patient	
  advocate	
  experience.	
  	
  
	
  
	
  
	
  
	
  
	
  
	
  

	
  

	
  

29	
  

	
  

	
  

4.0	
  Analysis	
  	
  

	
  

30	
  

	
  
	
  
	
  
	
  
4.0	
  Analysis	
  
	
  
	
  
This	
  design	
  research	
  first	
  started	
  with	
  ethnographic	
  fieldwork.	
  During	
  this	
  time,	
  several	
  
conclusions	
  were	
  drawn.	
  In	
  the	
  semi-­‐structured	
  interviews	
  held	
  at	
  the	
  chosen	
  hospitals,	
  it	
  was	
  
found	
  that	
  healthcare	
  providers’	
  and	
  authorities’	
  assertions	
  of	
  the	
  importance	
  of	
  leaving	
  patients	
  
alone	
  to	
  rest	
  is	
  incorrect.	
  This	
  misconception	
  is	
  borne	
  from	
  the	
  belief	
  that	
  visits	
  from	
  family	
  and	
  
friends	
  cause	
  stress	
  to	
  patients.	
  Patients	
  were	
  actually	
  much	
  more	
  at	
  ease	
  knowing	
  that	
  their	
  loved	
  
ones	
  were	
  nearby.	
  Patient	
  advocates	
  were	
  also	
  more	
  relaxed	
  and	
  reassured	
  when	
  they	
  could	
  keep	
  
an	
  eye	
  on	
  patients	
  at	
  all	
  times.	
  It	
  was	
  found	
  that	
  the	
  patient	
  advocates	
  provide	
  patients	
  with	
  
emotional	
  support	
  in	
  an	
  over-­‐stimulating	
  environment,	
  and	
  lend	
  a	
  sense	
  of	
  familiarity	
  in	
  unfamiliar	
  
surroundings.	
  The	
  same	
  was	
  concluded	
  for	
  patient	
  advocates.	
  Empirical	
  data	
  also	
  shows	
  that	
  visits	
  
by	
  family	
  and	
  friends	
  do	
  not	
  usually	
  increase	
  patients’	
  stress	
  levels,	
  as	
  measured	
  by	
  blood	
  pressure,	
  
heart	
  rate	
  and	
  intracranial	
  pressure,	
  but	
  may	
  in	
  fact	
  lower	
  them	
  (Meredith,	
  and	
  Wood,	
  1996).	
  	
  
	
  

After	
  interviewing	
  patient	
  advocates	
  and	
  professional	
  staff,	
  it	
  was	
  found	
  that	
  patient	
  

advocates	
  serve	
  as	
  a	
  helpful	
  support	
  structure	
  facilitating	
  communication	
  between	
  patients	
  and	
  
clinicians.	
  Furthermore,	
  patient	
  advocates	
  were	
  well	
  informed	
  about	
  the	
  wellbeing	
  of	
  patients,	
  
which	
  enabled	
  them	
  to	
  pass	
  along	
  this	
  knowledge	
  to	
  patients’	
  extended	
  social	
  networks.	
  Patient	
  
advocates	
  were	
  often	
  also	
  able	
  to	
  provide	
  feedback	
  to	
  nurses	
  and	
  physicians	
  more	
  effectively	
  than	
  
the	
  critically	
  ill	
  patient.	
  The	
  strict	
  nursing	
  hours	
  and	
  inflexibility	
  of	
  the	
  healthcare	
  institutions,	
  
however,	
  created	
  unnecessary	
  stress	
  for	
  patient	
  advocates.	
  During	
  interviews	
  with	
  nurses	
  and	
  
volunteer	
  staff,	
  it	
  was	
  found	
  that	
  medical	
  care	
  providers	
  were	
  subconsciously	
  dependent	
  on	
  patient	
  
advocates	
  for	
  mediation	
  and	
  communication	
  with	
  patients.	
  Consciously,	
  however,	
  there	
  was	
  an	
  
evident	
  lack	
  of	
  emphasis	
  on	
  the	
  importance	
  of	
  patient	
  advocates’	
  role	
  within	
  the	
  system	
  as	
  a	
  whole,	
  
which	
  has	
  resulted	
  in	
  limited	
  support	
  for	
  patient	
  advocates.	
  	
  
	
  

Custom-­‐tailored	
  organizational	
  and	
  networking	
  tools	
  designed	
  specifically	
  for	
  distressed	
  

patient	
  advocates	
  could	
  create	
  a	
  meaningful	
  experience	
  that	
  would	
  counter	
  the	
  negative	
  
experiences	
  patient	
  advocates	
  might	
  experience	
  due	
  to	
  their	
  already	
  distressing	
  situation,	
  or	
  a	
  lack	
  
of	
  support	
  and	
  understanding	
  for	
  them	
  and	
  their	
  roles	
  within	
  the	
  medical	
  system	
  as	
  a	
  whole.	
  	
  

	
  

31	
  

	
  

To	
  provide	
  supportive	
  data	
  for	
  the	
  ethnographic	
  research,	
  a	
  set	
  of	
  focus	
  group	
  workshops	
  

were	
  held.	
  Both	
  performance	
  and	
  qualitative	
  feedback	
  data	
  was	
  collected.	
  During	
  these	
  workshops,	
  
interaction	
  with	
  the	
  app	
  was	
  tested.	
  The	
  ease	
  of	
  use	
  and	
  learning	
  opportunities	
  was	
  noticeably	
  high	
  
during	
  the	
  usability	
  testing.	
  Patient	
  advocates	
  reported	
  that	
  it	
  was	
  easy	
  to	
  get	
  to	
  their	
  desired	
  
destination	
  when	
  they	
  had	
  a	
  task	
  in	
  mind.	
  The	
  number	
  of	
  tabs	
  and	
  pages	
  they	
  had	
  to	
  go	
  through	
  
was	
  irrelevant	
  to	
  them,	
  as	
  long	
  as	
  they	
  knew	
  where	
  they	
  were	
  and	
  where	
  they	
  were	
  heading.	
  The	
  
taxonomy	
  was	
  also	
  tested	
  in	
  several	
  decision	
  tree	
  activities.	
  Users	
  related	
  faster	
  to	
  icons,	
  and	
  used	
  
the	
  titles	
  of	
  functions	
  as	
  reassurance.	
  This	
  feedback	
  provided	
  opportunities	
  for	
  the	
  design	
  of	
  the	
  
app	
  to	
  improve.	
  A	
  feedback	
  loop	
  held	
  upmost	
  importance,	
  due	
  to	
  the	
  haptic	
  nature	
  of	
  the	
  device.	
  
Functions	
  that	
  lit	
  up	
  and	
  changed	
  color	
  were	
  regarded	
  higher	
  than	
  those	
  with	
  another	
  popup	
  
prompt.	
  The	
  visual	
  design	
  was	
  presented	
  in	
  the	
  form	
  of	
  mood-­‐boards	
  and	
  color	
  swatches	
  Patient	
  
advocates	
  reacted	
  positively	
  toward	
  nature	
  scenes	
  and	
  organic	
  forms	
  of	
  info-­‐graphics.	
  	
  
	
  

The	
  goal	
  of	
  the	
  user	
  tests	
  and	
  task	
  flows	
  was	
  to	
  observe	
  the	
  way	
  participants	
  interacted	
  

with	
  the	
  product.	
  During	
  this	
  observation,	
  however,	
  distinct	
  user	
  experiences	
  and	
  emotions	
  were	
  
noted	
  as	
  arising	
  from	
  use	
  interaction	
  with	
  the	
  product.	
  Patient	
  advocates	
  walked	
  away	
  with	
  an	
  ease	
  
of	
  mind	
  that	
  their	
  logistical	
  health	
  recording	
  needs	
  were	
  consolidated	
  on	
  a	
  single	
  mobile	
  platform.	
  
It	
  was	
  concluded	
  that	
  the	
  services	
  this	
  app	
  provided	
  could	
  measurable	
  reduce	
  anxiety	
  and	
  stress	
  
experienced	
  by	
  flustered	
  patient	
  advocates.	
  	
  
	
  
	
  
	
  
	
  
	
  
	
  

	
  

	
  

32	
  

	
  

	
  

5.0	
  Design	
  Brief	
  	
  

	
  

33	
  

	
  
	
  
5.1	
  Tablets	
  and	
  Gestures	
  
	
  
“Experts	
  are	
  rarely	
  insulted	
  by	
  something	
  that	
  is	
  clear	
  enough	
  for	
  beginners.	
  Everybody	
  
appreciates	
  clarity.”	
  
	
  

	
  

	
  

	
  

	
  

	
  

	
  

	
  

	
  

	
  

	
  

	
  —Steve	
  Krug	
  (2000)	
  

Through	
  the	
  observation	
  of	
  patient	
  advocates	
  in	
  healthcare	
  facilities,	
  it	
  was	
  noted	
  that	
  many	
  used	
  
iPads	
  and	
  were	
  more	
  comfortable	
  with	
  the	
  Apple	
  operating	
  system	
  (iOS)	
  versus	
  others	
  on	
  the	
  
market.	
  	
  Apple	
  products	
  have	
  become	
  a	
  key	
  player	
  in	
  healthcare.	
  The	
  iPod	
  touch	
  for	
  example,	
  has	
  
greatly	
  benefited	
  patients	
  with	
  down	
  syndrome,	
  autism,	
  stroke	
  and	
  other	
  speech-­‐impairing	
  
conditions	
  via	
  its	
  speech	
  software.	
  The	
  iPad	
  has	
  continued	
  to	
  provide	
  these	
  benefits	
  amongst	
  others	
  
on	
  a	
  larger	
  and	
  more	
  dynamic	
  platform.	
  The	
  iPhone	
  has	
  revolutionized	
  mobile	
  phones	
  with	
  it’s	
  
effective	
  human	
  centered	
  design.	
  It	
  has	
  allowed	
  many	
  who	
  have	
  been	
  reluctant	
  to	
  use	
  iOS	
  devices	
  to	
  
reconsider.	
  The	
  iPad	
  has	
  done	
  the	
  same	
  for	
  tablets	
  ever	
  since	
  its	
  launch	
  and	
  consumers	
  have	
  had	
  a	
  
sense	
  of	
  familiarity	
  with	
  the	
  iOS	
  therefore,	
  adapting	
  to	
  the	
  iPad	
  requires	
  minimum	
  efforts.	
  	
  
	
  

Focus	
  group	
  members	
  were	
  very	
  attracted	
  to	
  the	
  idea	
  of	
  a	
  tablet	
  because	
  of	
  its	
  size.	
  The	
  

tablet	
  is	
  much	
  more	
  convenient	
  to	
  carry	
  around	
  than	
  a	
  laptop.	
  It	
  is	
  also	
  simple	
  to	
  use	
  while	
  serving	
  
multiple	
  purposes,	
  and	
  is	
  excellent	
  for	
  both	
  entertainment	
  and	
  business	
  purposes.	
  Along	
  with	
  the	
  
portability	
  and	
  simplicity,	
  what	
  appeals	
  to	
  even	
  the	
  non-­‐tech	
  crowd	
  is	
  the	
  intuitiveness	
  of	
  a	
  tablet’s	
  
natural	
  user	
  touch-­‐interface	
  and	
  simplicity	
  of	
  iOS.	
  	
  
	
  

While	
  there	
  is	
  a	
  surfeit	
  of	
  options	
  in	
  the	
  market,	
  the	
  tablet	
  world	
  is	
  predominantly	
  divided	
  

between	
  the	
  Apple	
  iPad	
  and	
  Android	
  hemispheres.	
  The	
  iPad,	
  however,	
  is	
  the	
  leading	
  tablet	
  on	
  the	
  
market	
  by	
  87%	
  in	
  2010.	
  (http://press.trendforce.com,	
  2012).	
  	
  Figure	
  8	
  shows	
  that	
  despite	
  the	
  
growth	
  of	
  non-­‐Apple	
  products	
  in	
  the	
  market	
  the	
  iPad	
  will	
  still	
  be	
  the	
  leading	
  tablet	
  by	
  2015.	
  While	
  
the	
  iPad	
  has	
  the	
  same	
  operating	
  system	
  as	
  the	
  iPhone	
  and	
  offers	
  many	
  of	
  the	
  same	
  services,	
  the	
  
iPad	
  focuses	
  on	
  business	
  and	
  leisure.	
  The	
  iPad’s	
  large	
  screen	
  has	
  more	
  information	
  real	
  estate,	
  
resulting	
  in	
  a	
  superior	
  experience	
  for	
  watching	
  and	
  recording	
  information.	
  	
  
	
  
	
  
	
  
	
  
	
  

	
  

34	
  

	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  

Figure	
  06:	
  TrendForce:	
  2012	
  Tablet	
  Sales	
  to	
  Hit	
  100	
  Million;	
  iPad	
  to	
  Take	
  Up	
  60%	
  Market	
  Share	
  

	
  

Retrieved	
  from	
  http://press.trendforce.com/en/node/3218.	
  

	
  
	
  

The	
  direct	
  manipulation	
  capabilities	
  of	
  the	
  iPad	
  allow	
  users	
  to	
  directly	
  interact	
  with	
  an	
  

object	
  in	
  the	
  digital	
  world	
  through	
  touch.	
  Users	
  relate	
  to	
  this	
  notion	
  because	
  it	
  is	
  exactly	
  how	
  they	
  
would	
  react	
  to	
  an	
  object	
  in	
  the	
  physical	
  world.	
  The	
  key	
  to	
  direct	
  manipulation	
  is	
  the	
  notion	
  that	
  the	
  
result	
  of	
  the	
  interaction	
  with	
  an	
  object	
  is	
  so	
  closely	
  associated	
  with	
  the	
  user’s	
  input	
  that	
  they	
  
perceive	
  no	
  barrier	
  between	
  the	
  virtual	
  and	
  the	
  real.	
  	
  
	
  

It	
  is	
  a	
  designer’s	
  responsibility	
  to	
  provide	
  mental	
  cues	
  and	
  indicators	
  to	
  the	
  users	
  of	
  the	
  

product.	
  Immediate	
  feedback	
  in	
  the	
  case	
  of	
  a	
  digital	
  application	
  is	
  necessary	
  to	
  guide	
  the	
  user	
  
through	
  the	
  functions.	
  This	
  is	
  especially	
  significant	
  in	
  a	
  haptic	
  device,	
  where	
  the	
  sense	
  of	
  touch	
  has	
  
been	
  minimized	
  and	
  the	
  user	
  has	
  been	
  reduced	
  to	
  pressing	
  a	
  virtual	
  button	
  as	
  opposed	
  to	
  an	
  actual	
  
one.	
  When	
  using	
  a	
  touch	
  screen	
  device,	
  it	
  is	
  a	
  necessity	
  to	
  look	
  directly	
  at	
  the	
  screen	
  to	
  obtain	
  visual	
  
confirmation	
  as	
  feedback.	
  In	
  every	
  web	
  application,	
  a	
  continual	
  feedback	
  loop	
  assists	
  with	
  engaging	
  
the	
  user.	
  This	
  is	
  very	
  significant	
  to	
  the	
  tablet	
  experience.	
  
	
  

	
  	
  

	
  
	
  
	
  
	
  
	
  

	
  

35	
  

5.2	
  Clutter	
  Reduction	
  &	
  Simplicity	
  
	
  
	
  	
  
One	
  reason	
  for	
  technology’s	
  advancement	
  today	
  is	
  a	
  constant	
  human	
  need	
  to	
  make	
  life	
  easier.	
  Often,	
  
however,	
  technology	
  defeats	
  its	
  intended	
  purpose	
  of	
  making	
  life	
  easier	
  due	
  to	
  its	
  confusing	
  
software	
  systems	
  and	
  information	
  architecture.	
  Norman	
  (1988)	
  indicates	
  that	
  with	
  	
  
the	
  creation	
  of	
  each	
  new	
  technology,	
  a	
  new	
  benefit	
  is	
  offered	
  to	
  the	
  user;	
  with	
  new	
  benefits,	
  
technologies	
  become	
  more	
  complex,	
  which	
  may	
  lead	
  to	
  a	
  paradox	
  in	
  design.	
  	
  
	
  

Due	
  to	
  faulty	
  mental	
  models,	
  the	
  patient	
  advocate	
  may	
  feel	
  frustrated,	
  confused	
  and	
  

incompetent,	
  concluding	
  that	
  they	
  are	
  not	
  technologically	
  savvy.	
  The	
  real	
  blame	
  should	
  rest	
  on	
  the	
  
design	
  of	
  the	
  overly-­‐complicated	
  application.	
  As	
  Norman	
  (1988)	
  suggests,	
  “the	
  principles	
  of	
  good	
  
design	
  can	
  make	
  complexity	
  manageable.”	
  To	
  avoid	
  the	
  paradox	
  of	
  technology,	
  it	
  is	
  important	
  to	
  
give	
  voice	
  to	
  UXD	
  and	
  HCD.	
  This	
  is	
  particularly	
  significant	
  in	
  designing	
  an	
  operating	
  system	
  that	
  
specifically	
  targets	
  distressed	
  patient	
  advocates.	
  By	
  carefully	
  deploying	
  HCD	
  practices	
  in	
  a	
  software	
  
application,	
  it	
  is	
  viable	
  to	
  alleviate	
  stress	
  and	
  anxiety	
  of	
  patient	
  advocates	
  without	
  adding	
  to	
  it	
  with	
  
technological	
  complexities.	
  	
  
	
  

One	
  way	
  to	
  alleviate	
  stress	
  through	
  design	
  is	
  to	
  emphasize	
  simplicity	
  and	
  organization	
  of	
  

functions.	
  John	
  Maeda,	
  in	
  his	
  book	
  The	
  Laws	
  of	
  Simplicity	
  (2006),	
  addresses	
  the	
  importance	
  of	
  
simplicity	
  in	
  design	
  using	
  ten	
  different	
  laws.	
  One	
  clutter-­‐reducing	
  law	
  that	
  can	
  be	
  applied	
  to	
  help	
  
enhance	
  the	
  experience	
  of	
  app	
  users	
  is	
  The	
  Law	
  of	
  Organization.	
  Maeda	
  states:	
  organization	
  makes	
  a	
  
system	
  of	
  many	
  appear	
  fewer	
  (p.	
  11).	
  He	
  goes	
  further	
  to	
  say	
  that	
  the	
  organization	
  of	
  items	
  has	
  to	
  be	
  
grouped	
  together	
  in	
  order	
  for	
  them	
  to	
  make	
  sense	
  as	
  a	
  whole	
  entity.	
  He	
  introduces	
  SLIP,	
  which	
  
stands	
  for	
  “Sort,	
  Label,	
  Integrate	
  and	
  Prioritize,”	
  as	
  a	
  means	
  to	
  organize	
  a	
  design	
  process.	
  An	
  app	
  
should	
  not	
  consist	
  of	
  too	
  many	
  controls	
  and	
  complex	
  functions,	
  or	
  the	
  complexity	
  of	
  the	
  design	
  will	
  
defeat	
  the	
  purpose	
  of	
  alleviating	
  patient	
  advocate	
  stress.	
  Edward	
  Tufte	
  on	
  information	
  design	
  states	
  
(1990)	
  	
  “Clutter	
  and	
  confusion	
  is	
  a	
  failure	
  of	
  design,	
  not	
  an	
  attribute	
  of	
  information.”	
  By	
  employing	
  
SLIP	
  and	
  adding	
  the	
  “meaningful”	
  in	
  the	
  design	
  process,	
  it	
  may	
  result	
  in	
  the	
  elimination	
  of	
  
unnecessary	
  interface	
  layers	
  within	
  the	
  application.	
  This	
  provides	
  users	
  a	
  meaningful	
  and	
  seamless	
  
experience	
  with	
  the	
  app.	
  
	
  

For	
  a	
  better	
  usability	
  and	
  user	
  experience,	
  the	
  application	
  has	
  also	
  been	
  designed	
  using	
  

Normans’	
  seven	
  principles	
  of	
  “transforming	
  difficult	
  tasks	
  into	
  simple	
  ones”	
  (p.	
  188).	
  One	
  of	
  the	
  
principles	
  that	
  has	
  been	
  taken	
  into	
  particular	
  consideration	
  for	
  the	
  design	
  of	
  this	
  app	
  is	
  simplify	
  the	
  
structure	
  of	
  tasks.	
  Norman	
  stresses	
  that	
  designers	
  need	
  to	
  pay	
  particular	
  attention	
  to	
  the	
  user’s	
  

	
  

36	
  

limitations	
  of	
  long-­‐term	
  and	
  short-­‐term	
  memory:	
  “tasks	
  should	
  be	
  simple	
  in	
  structure,	
  minimizing	
  
the	
  amount	
  of	
  planning	
  or	
  problem	
  solving	
  they	
  require.	
  Unnecessarily	
  complex	
  tasks	
  can	
  be	
  
restructured,	
  usually	
  by	
  using	
  technological	
  innovations”	
  (p.	
  191).	
  He	
  goes	
  on	
  to	
  state	
  that	
  “the	
  
system	
  should	
  provide	
  technological	
  assistance	
  for	
  any	
  temporary	
  memory	
  requirements”	
  (p.	
  192).	
  
This	
  application	
  in	
  particular	
  should	
  not	
  frustrate	
  the	
  users	
  by	
  requiring	
  them	
  to	
  remember	
  more	
  
than	
  five	
  unrelated	
  items	
  at	
  a	
  time.	
  One	
  key	
  to	
  the	
  success	
  of	
  this	
  application	
  is	
  to	
  provide	
  mental	
  
aids	
  that	
  keep	
  the	
  tasks	
  simple.	
  Simplifying	
  the	
  information	
  architecture	
  of	
  an	
  app	
  ensures	
  that	
  the	
  
use	
  of	
  such	
  a	
  potentially	
  complex	
  interface	
  is	
  understandable	
  and	
  enjoyable	
  by	
  even	
  distressed	
  
users.	
  Another	
  critical	
  part	
  of	
  the	
  design	
  is	
  the	
  visual	
  aesthetics	
  of	
  the	
  app.	
  	
  
	
  
	
  
5.3	
  Visual	
  Design	
  
	
  
	
  
“Like	
  all	
  forms	
  of	
  design,	
  visual	
  design	
  is	
  about	
  problem	
  solving,	
  not	
  about	
  personal	
  
preference	
  or	
  unsupported	
  opinion.”	
  
	
  

	
  

	
  

	
  

	
  

	
  

	
  

	
  

—Bob	
  Baxley	
  (2003,	
  p.	
  363)	
  

	
  
	
  
During	
  the	
  focus	
  groups	
  and	
  user	
  tests,	
  the	
  participating	
  patient	
  advocates	
  were	
  presented	
  with	
  
various	
  themed	
  mood-­‐boards	
  and	
  color	
  swatches.	
  Among	
  them	
  were	
  business,	
  nature,	
  cheerful	
  and	
  
Zen-­‐inspired	
  themes.	
  Participants	
  responded	
  positively	
  towards	
  the	
  nature	
  scenes	
  and	
  found	
  them	
  
calming	
  and	
  pleasant	
  to	
  look	
  at.	
  The	
  nature	
  graphics	
  were	
  highly	
  regarded,	
  even	
  by	
  those	
  who	
  did	
  
not	
  spend	
  much	
  time	
  outside	
  with	
  the	
  natural	
  environment.	
  Group	
  members	
  found	
  that	
  these	
  
scenes	
  were	
  “reminders	
  and	
  inspiration”	
  to	
  make	
  the	
  time	
  for	
  outdoor	
  activity	
  (anonymous,	
  
personal).	
  	
  
	
  

It	
  has	
  been	
  theorized	
  that	
  nature	
  and	
  other	
  positive	
  distractions	
  have	
  therapeutic	
  

components	
  that	
  effectively	
  improve	
  mood	
  and	
  behavior	
  while	
  alleviating	
  human	
  stress.	
  When	
  
someone	
  experiences	
  stress	
  and	
  anxiety,	
  looking	
  at	
  particular	
  kinds	
  of	
  nature	
  scenes	
  may	
  elicit	
  
beneficial	
  psychological	
  changes	
  such	
  as	
  lowering	
  blood	
  pressure	
  (Ulrich	
  et	
  al.,	
  1991).	
  The	
  
deliberate	
  attempt	
  to	
  translate	
  an	
  understanding	
  of	
  the	
  inherent	
  human	
  ability	
  to	
  affiliate	
  with	
  
natural	
  systems	
  and	
  processes	
  is	
  known	
  as	
  biophilia	
  (Wilson,	
  1984;	
  Kellert	
  and	
  Wilson,	
  1993).	
  It	
  
may	
  be	
  beneficial	
  to	
  incorporate	
  holistic	
  design	
  process	
  such	
  as	
  biophilic	
  design	
  into	
  the	
  digital	
  

	
  

37	
  

environment.	
  As	
  was	
  confirmed	
  in	
  the	
  focus	
  groups	
  and	
  user	
  tests,	
  one	
  way	
  to	
  use	
  nature	
  is	
  as	
  a	
  
metaphoric	
  visual	
  language.	
  	
  
	
  

However,	
  the	
  app	
  should	
  not	
  be	
  decorated	
  with	
  green	
  graphic	
  leaves	
  and	
  wooden	
  

backgrounds.	
  Micheal	
  Mehaffy	
  and	
  Nikos	
  Salingaros	
  argue	
  that	
  fake	
  wood	
  patterns,	
  cultured	
  stones	
  
and	
  laminated	
  floors	
  are	
  a	
  fake	
  aesthetic	
  costume	
  and	
  do	
  not	
  offer	
  any	
  biophilic	
  nourishments	
  
(Salingaros	
  and	
  Mehaffy,	
  2006).	
  As	
  a	
  case	
  in	
  point,	
  the	
  singer	
  Bjork	
  has	
  collaborated	
  with	
  artists,	
  
designers	
  and	
  programmers	
  to	
  create	
  an	
  app	
  that	
  is	
  named	
  after	
  her	
  album	
  Biophillia.	
  Her	
  app	
  is	
  an	
  
exploration	
  platform	
  where	
  music	
  meets	
  nature	
  and	
  technology.	
  The	
  app	
  uses	
  nature	
  as	
  metaphor	
  
to	
  playfully	
  navigate	
  through	
  the	
  tracks	
  and	
  the	
  lyrics.	
  Similar	
  to	
  how	
  Bjork’s	
  app	
  uses	
  biophiliac	
  
techniques	
  to	
  enhance	
  music	
  experiences,	
  the	
  patient	
  advocate	
  app	
  uses	
  biophiliac	
  techniques	
  to	
  
enhance	
  the	
  user	
  experience,	
  and	
  navigation	
  design	
  process	
  to	
  create	
  a	
  space	
  that	
  stimulates	
  and	
  
engages	
  the	
  patient	
  advocates	
  in	
  ways	
  that	
  alleviate	
  stress	
  and	
  allows	
  them	
  to	
  momentarily	
  escape	
  
their	
  reality.	
  	
  
	
  
	
  

The	
  cheerful	
  and	
  colorful	
  info-­‐graphics	
  were	
  also	
  highly	
  regarded.	
  They	
  proclaimed	
  that	
  

spending	
  energy	
  thinking	
  about	
  illness	
  or	
  death	
  requires	
  a	
  boost	
  in	
  spirit	
  and	
  mood.	
  While	
  sitting	
  in	
  
institutional	
  waiting	
  rooms	
  it	
  helps	
  to	
  interact	
  with	
  an	
  app	
  that	
  is	
  uplifting	
  and	
  even	
  humorous	
  	
  
(fig.	
  07).	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  

Figure	
  07:	
  Mood-­‐boards	
  used	
  to	
  explore	
  visual	
  design	
  during	
  focus	
  group	
  session	
  two.	
  	
  

	
  

	
  

38	
  

	
  
	
  

	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  

Figure08:	
  Note	
  feature	
  allows	
  	
  patient	
  advocates	
  to	
  capture	
  conversations	
  and	
  file	
  them.	
  	
  

	
  
	
  	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
Figure09:	
  Additional	
  note	
  taking	
  features	
  include	
  voice	
  recording	
  and	
  image	
  capturing.	
  	
  	
  	
  

	
  

39	
  

	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
Figure13:	
  Additional	
  note	
  taking	
  features	
  include	
  voice	
  recording	
  and	
  image	
  capturing.	
  	
  	
  	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
Figure10:	
  File	
  View	
  mode.	
  	
  	
  	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
Figure11:	
  Push	
  Notification	
  function	
  allows	
  users	
  to	
  send	
  patient	
  status	
  updates	
  at	
  once.	
  

	
  

40	
  

	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
Figure12:	
  Push	
  Notification	
  function	
  

	
  

41	
  

	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  

6.0	
  Conclusion	
  	
  

	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  

	
  
	
  

	
  

42	
  

	
  
6.0	
  Conclusion	
  
	
  
This	
  paper	
  identifies	
  a	
  significant	
  knowledge	
  deficit	
  in	
  patient	
  advocate-­‐centric	
  healthcare	
  design.	
  
The	
  research	
  investigates	
  several	
  different	
  design	
  processes	
  that	
  can	
  be	
  used	
  to	
  remedy	
  the	
  
emotional,	
  mental,	
  and	
  logistical	
  needs	
  of	
  patient	
  advocates.	
  	
  As	
  a	
  result,	
  human-­‐centered-­‐design,	
  
empathic	
  design,	
  and	
  healthcare	
  experience	
  design	
  is	
  utilized	
  to	
  remedy	
  the	
  needs	
  of	
  patient	
  
advocates.	
  	
  
	
  

First,	
  the	
  critical	
  role	
  of	
  patient	
  advocates	
  within	
  the	
  healthcare	
  system	
  has	
  been	
  identified.	
  

They	
  tend	
  to	
  be	
  the	
  main	
  communication	
  backbone	
  between	
  the	
  patients	
  and	
  care	
  providers,	
  and	
  
patient	
  and	
  extended	
  family.	
  Their	
  bedside	
  companionship	
  and	
  mere	
  presence	
  reduces	
  the	
  patient’s	
  
stress	
  levels	
  who	
  often	
  feel	
  vulnerable	
  in	
  an	
  over	
  stimulated	
  environment.	
  This	
  research	
  has	
  found	
  
that	
  supporting	
  patient	
  advocates	
  is	
  unquestionably	
  vital	
  to	
  the	
  overall	
  healthcare	
  system	
  as	
  they	
  
play	
  a	
  significant	
  role	
  in	
  it.	
  Most	
  patient	
  advocates	
  juggle	
  many	
  responsibilities	
  being	
  that	
  of	
  their	
  
chronically	
  ill	
  loved	
  ones	
  and	
  that	
  of	
  their	
  own.	
  Some	
  of	
  these	
  responsibilities	
  include	
  
accompanying	
  procedures	
  and	
  treatments,	
  gathering	
  patient	
  health	
  related	
  information,	
  making	
  
appointments,	
  and	
  facilitating	
  decision-­‐making.	
  As	
  a	
  result	
  of	
  these	
  responsibilities,	
  patient	
  
advocates	
  are	
  stressed,	
  and	
  mentally	
  exhausted.	
  By	
  reducing	
  these	
  strains,	
  patient	
  advocates	
  are	
  
better	
  able	
  to	
  cope	
  with	
  their	
  stress,	
  and	
  provide	
  better	
  care	
  and	
  support	
  for	
  themselves	
  and	
  for	
  the	
  
patient	
  they	
  are	
  caring	
  for.	
  	
  
	
  
	
  

Second,	
  the	
  emotional	
  and	
  logistical	
  needs	
  of	
  patient	
  advocates	
  were	
  investigated	
  through	
  

several	
  design	
  research	
  methodologies.	
  Ethnographic	
  field	
  work	
  offered	
  a	
  closer	
  insight	
  into	
  a	
  
typical	
  day	
  of	
  a	
  patient	
  advocate.	
  By	
  observing	
  behaviors	
  and	
  social	
  interactions,	
  it	
  was	
  found	
  that	
  
patient	
  advocates	
  and	
  frequent	
  hospital	
  goers	
  own	
  iPads	
  which	
  they	
  carry	
  with	
  them	
  during	
  
hospital	
  visits.	
  This	
  led	
  to	
  the	
  realization	
  of	
  the	
  significant	
  role	
  mHealth	
  plays	
  in	
  providing	
  
organizational	
  and	
  emotional	
  support	
  to	
  patient	
  advocates.	
  To	
  explore	
  these	
  needs,	
  patient	
  
advocates	
  were	
  invited	
  to	
  participate	
  in	
  focus	
  groups	
  and	
  user	
  testing	
  sessions.	
  As	
  a	
  result,	
  
palliative	
  design	
  recommendations	
  were	
  made.	
  Strategic	
  user-­‐experience-­‐design,	
  human-­‐centered-­‐
design	
  and	
  mhealth	
  have	
  been	
  triangulated	
  to	
  create	
  an	
  iOS	
  app	
  for	
  an	
  iPad.	
  	
  
	
  

The	
  app	
  is	
  specifically	
  designed	
  for	
  patient	
  advocates.	
  It	
  offers	
  an	
  integrated	
  platform	
  made	
  

of	
  organizational	
  and	
  communication	
  tools.	
  The	
  research	
  conducted	
  suggests	
  that	
  patient	
  advocates	
  
are	
  in	
  dire	
  need	
  to	
  communicate	
  with	
  others	
  who	
  are	
  experiencing	
  similar	
  traumatic	
  events.	
  The	
  
social	
  networking	
  aspect	
  of	
  the	
  platform	
  enables	
  users	
  to	
  exchange	
  health	
  related	
  information	
  and	
  

	
  

43	
  

sympathy	
  by	
  digitally	
  connecting	
  with	
  other	
  patient	
  advocates	
  ‘alike’.	
  	
  
	
  

The	
  research	
  also	
  suggests	
  that	
  patient	
  advocates	
  need	
  a	
  consolidated	
  platform	
  to	
  update	
  

the	
  patient’s	
  health	
  status	
  they	
  are	
  caring	
  for.	
  This	
  alleviates	
  the	
  stress	
  of	
  receiving	
  and	
  making	
  
multiple	
  phone	
  calls,	
  sms	
  messages,	
  and	
  emails	
  to	
  extended	
  family	
  members	
  and	
  friends.	
  The	
  
organizational	
  tool	
  acts	
  as	
  a	
  mobile	
  patient	
  health	
  data	
  system	
  that	
  enables	
  users	
  to	
  set	
  
appointment	
  alerts,	
  medication	
  details,	
  and	
  health	
  history.	
  	
  The	
  content	
  of	
  these	
  services	
  tackles	
  
patient	
  advocates’	
  logistical	
  needs	
  by	
  creating	
  an	
  ease	
  of	
  mind	
  and	
  psychosocial	
  support.	
  The	
  
information	
  architecture	
  focuses	
  on	
  the	
  necessity	
  of	
  keeping	
  design	
  simple	
  with	
  an	
  emphasis	
  on	
  
ease	
  of	
  function	
  and	
  usability	
  heuristics.	
  	
  
	
  

As	
  the	
  mobile	
  health	
  industry	
  grows	
  exponentially	
  with	
  the	
  number	
  of	
  health	
  and	
  medical	
  

related	
  apps	
  being	
  downloaded,	
  so	
  will	
  the	
  interest	
  of	
  stakeholders	
  and	
  designers.	
  The	
  question	
  
remains:	
  will	
  designers	
  and	
  stakeholders	
  realize	
  the	
  significance	
  of	
  patient	
  advocates	
  and	
  
caretakers?	
  By	
  using	
  the	
  mentioned	
  design	
  processes	
  in	
  this	
  thesis,	
  it	
  is	
  hoped	
  the	
  roles	
  of	
  patient	
  
advocacy	
  be	
  emphasized	
  in	
  future	
  healthcare	
  experience	
  design	
  directions.	
  
	
  

	
  	
  
	
  

	
  

	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  

	
  

44	
  

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  Human	
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apple.com/library/ios/#DOCUMENTATION/User	
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Mahemoff,	
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Bate,	
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the	
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biophilia-­‐where-­‐nature-­‐meets-­‐music/	
  
	
  
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Brown,	
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45	
  

Changing	
  the	
  Concept	
  of	
  Families	
  as	
  Visitors:	
  Supporting	
  Family	
  Presence	
  and	
  Participation.	
  
(n.d.).Resources.	
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https://my.volusion.com/FBService.aspx?mode=og&url=aHR0cDovL3Jlc291cmNlcy5pcGZjYy5vcm
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publications.com/articles/moving-­‐toward-­‐an-­‐open-­‐standard-­‐universal-­‐health-­‐record/	
  
	
  
Rubin,	
  J.,	
  &	
  Chisnell,	
  D.	
  (2008).	
  Handbook	
  of	
  usability	
  testing:	
  how	
  to	
  plan,	
  design,	
  and	
  conduct	
  
	
  
effective	
  tests.	
  John	
  Wiley	
  &	
  Sons.	
  
	
  
Rushton,	
  C.	
  H.,	
  Armstrong,	
  L.,	
  &	
  McEnhill,	
  M.	
  (1996).	
  Establishing	
  therapeutic	
  boundaries	
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  patient	
  
	
  
advocates.	
  Pediatric	
  nursing,	
  22(3),	
  185.	
  
	
  
Saralin.	
  (2012).	
  TrendForce:	
  2012	
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  to	
  Hit	
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  iPad	
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  Take	
  Up	
  60%	
  Market	
  
	
  
Share	
  Wed.	
  Retrieved	
  from	
  http://press.trendforce.com/en/node/3218	
  
	
  
Sarahson-­‐Kahn,	
  J.	
  (2008).	
  The	
  Wisdom	
  of	
  Patients:	
  Health	
  Care	
  Meets	
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  Social	
  Media	
  -­‐	
  
	
  
CHCF.org.	
  Retrieved	
  March	
  3,	
  2012,	
  from	
  http://www.chcf.org/publications/2008/04/the-­‐
	
  
wisdom-­‐of-­‐patients-­‐health-­‐care-­‐meets-­‐online-­‐social-­‐media	
  
	
  
Salingaros,	
  N.	
  A.,	
  &	
  Mehaffy,	
  M.	
  W.	
  (2006).	
  A	
  theory	
  of	
  architecture.	
  ISI	
  Distributed	
  Titles.	
  
	
  
Shedroff,	
  N.	
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  Design	
  is	
  the	
  problem:	
  the	
  future	
  of	
  design	
  must	
  be	
  sustainable.	
  Rosenfeld	
  
	
  
Media.	
  
	
  
Spencer,	
  D.	
  (2009).	
  Card	
  Sorting:	
  Designing	
  Usable	
  Categories.	
  Rosenfeld	
  Media.	
  
	
  
Tang,	
  Paul	
  C.,	
  Ash,	
  J.	
  S.,	
  Bates,	
  D.	
  W.,	
  Overhage,	
  J.	
  M.,	
  &	
  Sands,	
  D.	
  Z.	
  (2006).	
  Personal	
  Health	
  Records:	
  
	
  
Definitions,	
  Benefits,	
  and	
  Strategies	
  for	
  Overcoming	
  Barriers	
  to	
  Adoption.	
  Journal	
  of	
  the	
  
	
  
American	
  Medical	
  Informatics	
  Association :	
  JAMIA,	
  13(2),	
  121–126.	
  
	
  
doi:10.1197/jamia.M2025	
  
	
  
Tanner,	
  A.	
  (2009).	
  Care,	
  nurturance	
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  morality:	
  the	
  role	
  of	
  visitors	
  and	
  the	
  Victorian	
  London	
  
	
  
children’s	
  hospital.	
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  Medica	
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  Netherlands),	
  86,	
  81–110.	
  
	
  
TechCrunch	
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  6	
  Big	
  HealthTech	
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  2012.	
  (n.d.-­‐a).TechCrunch.	
  
	
  
Retrieved	
  from	
  http://techcrunch.com/2012/01/01/healthtech-­‐2012/	
  
	
  
	
  
TechCrunch	
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  Mobile	
  Technology	
  Is	
  Transforming	
  The	
  Health	
  Industry,	
  But	
  To	
  What	
  Extent?	
  
	
  
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  Retrieved	
  from	
  http://techcrunch.com/2012/01/16/mobile-­‐
	
  
technology-­‐is-­‐transforming-­‐the-­‐health-­‐industry-­‐but-­‐to-­‐what-­‐extent/	
  
	
  
The	
  Daily,	
  Wednesday,	
  June	
  18,	
  2008.	
  Study:	
  Screen	
  time	
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January	
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Thompson,	
  S.	
  C.,	
  &	
  Spacapan,	
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  Envisioning	
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  T.,	
  &	
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  Measuring	
  the	
  user	
  experience:	
  collecting,	
  analyzing,	
  and	
  presenting	
  
	
  
usability	
  metrics.	
  Morgan	
  Kaufmann.	
  
	
  
Ulrich,	
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  Effects	
  of	
  Healthcare	
  Environmental	
  Design	
  on	
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Criticism,	
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Ulrich,	
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  Effects	
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  Healthcare	
  Environmental	
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  on	
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Criticism,	
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  Zimring,	
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  DuBose,	
  J.,	
  Seo,	
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  A	
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research	
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  healthcare	
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  Health	
  Environments	
  Research	
  &	
  
	
  
Design	
  Journal,	
  1(3),	
  61–121.	
  
	
  
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  D.	
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  Families	
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Routledge.	
  
	
  
Wilson,	
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  User	
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  Your	
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  to	
  Getting	
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  Morgan	
  
	
  
Kaufmann.	
  
	
  
Wolf,	
  C.	
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  Capturing	
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from	
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Designing	
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  processes,	
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  methods,	
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  405–
	
  
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  Mental	
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  Behavior.	
  Rosenfeld	
  Media.	
  
	
  	
  
	
  
	
  

	
  

51	
  

	
  

	
  

Appendices	
  	
  

	
  

52	
  

	
  
Appendix	
  
A.	
  Letter	
  of	
  Invitation	
  and	
  Consent	
  Form	
  
	
  
	
  
Project	
  Title:	
   Support	
  System	
  for	
  Patient	
  Advocates	
  
	
  
	
  
Dear	
  medical	
  professional	
  and	
  patient	
  advocate,	
  
	
  
You	
  are	
  invited	
  to	
  participate	
  in	
  a	
  study	
  that	
  involves	
  research.	
  The	
  purpose	
  of	
  this	
  study	
  is	
  to	
  
investigate	
  ways	
  to	
  alleviate	
  unnecessary	
  stress	
  experienced	
  by	
  patient	
  advocates	
  through	
  design	
  
tools	
  in	
  a	
  hospital	
  setting.	
  Interviews	
  with	
  professional	
  hospital	
  personnel	
  along	
  with	
  co-­‐creation	
  
workshops	
  aim	
  to	
  foster	
  a	
  better	
  understanding	
  and	
  appreciation	
  of	
  the	
  needs	
  of	
  patient	
  advocates.	
  
Results	
  will	
  inform	
  the	
  development	
  of	
  a	
  web,	
  mobile	
  app,	
  and	
  way-­‐finding	
  support	
  system	
  that	
  
aims	
  to	
  support	
  the	
  patient	
  advocate	
  in	
  caring	
  for	
  their	
  patient	
  with	
  the	
  hospital	
  system.	
  	
  
	
  
	
  
	
  
	
  
	
  
WHAT’S	
  INVOLVED	
  
	
  
The	
  research	
  study	
  will	
  consist	
  of	
  two	
  parts,	
  one	
  personal	
  interview,	
  and	
  a	
  three	
  phased	
  co-­‐creation	
  
design	
  workshop.	
  
	
  
The	
  interview	
  session,	
  conducted	
  by	
  Sogol	
  Assadbeigi,	
  will	
  take	
  no	
  longer	
  than	
  20	
  minutes	
  in	
  a	
  
location	
  most	
  convenient	
  for	
  you.	
  You	
  will	
  then	
  be	
  invited	
  to	
  join	
  a	
  small	
  group	
  of	
  individuals	
  for	
  a	
  
co-­‐creation	
  workshop	
  at	
  Emily	
  Carr	
  University	
  of	
  Art	
  and	
  Design	
  on	
  Granville	
  Island,	
  Vancouver	
  BC.	
  
The	
  researcher,	
  (Sogol	
  Assadbeigi),	
  will	
  encourage	
  an	
  open	
  discussion	
  on	
  how	
  design	
  can	
  facilitate	
  
the	
  needs	
  of	
  patient	
  advocates	
  in	
  a	
  hospital	
  setting.	
  You	
  will	
  be	
  provided	
  with	
  appropriate	
  
stationary	
  and	
  are	
  asked	
  to	
  take	
  part	
  in	
  the	
  design	
  solution.	
  In	
  a	
  second	
  phase	
  you	
  will	
  be	
  asked	
  to	
  
provide	
  your	
  comments	
  on	
  sketch	
  models	
  and	
  mock-­‐ups	
  of	
  the	
  possible	
  design	
  solution.	
  In	
  the	
  final	
  
phase	
  you	
  will	
  asked	
  to	
  test	
  and	
  comment	
  on	
  the	
  usability	
  of	
  the	
  final	
  prototype.	
  Each	
  co-­‐creation	
  
workshop	
  will	
  take	
  approximately	
  1.5	
  hours	
  of	
  your	
  time.	
  	
  
	
  
	
  
	
  
POTENTIAL	
  BENEFITS	
  AND	
  RISKS	
  
	
  
Possible	
  benefits	
  of	
  participation	
  include	
  a	
  better	
  understanding	
  of	
  the	
  issues	
  revolving	
  way-­‐finding	
  
and	
  environmental	
  psychology	
  design,	
  and	
  potentially	
  improve	
  the	
  role	
  of	
  the	
  patient	
  advocate	
  

	
  

53	
  

which	
  may	
  result	
  in	
  better	
  care.	
  The	
  research	
  project	
  is	
  aimed	
  at	
  benefit	
  the	
  healthcare	
  system	
  
attempting	
  to	
  improve	
  the	
  experience	
  of	
  patient	
  advocates	
  in	
  a	
  hospital	
  setting.	
  	
  
	
  
There	
  also	
  may	
  be	
  risks	
  associated	
  with	
  participation	
  as	
  participants	
  may	
  experience	
  some	
  stress	
  in	
  
answering	
  questions.	
  The	
  researcher	
  will	
  check	
  in	
  frequently	
  with	
  the	
  participants	
  to	
  ensure	
  that	
  
they	
  are	
  prepared	
  to	
  continue	
  with	
  the	
  interview	
  questions	
  or	
  probe	
  activities.	
  Participants	
  will	
  be	
  
advised	
  of	
  their	
  right	
  to	
  withdraw,	
  without	
  penalty	
  at	
  any	
  point	
  in	
  time.	
  	
  
	
  
	
  
CONFIDENTIALITY	
  
	
  
Participants’	
  contact	
  information	
  and	
  identifiers	
  (name,	
  addresses,	
  occupation)	
  will	
  be	
  handled	
  
confidentially	
  by	
  the	
  researcher	
  (Sogol	
  Assadbeigi).	
  All	
  information	
  that	
  you	
  provide	
  will	
  be	
  
handled	
  as	
  confidentially	
  as	
  possible	
  and	
  grouped	
  with	
  responses	
  from	
  other	
  participants.	
  Given	
  
the	
  format	
  of	
  the	
  workshops,	
  we	
  ask	
  you	
  to	
  respect	
  your	
  fellow	
  participants	
  by	
  keeping	
  all	
  
information	
  that	
  identifies	
  or	
  could	
  potentially	
  identify	
  a	
  participant	
  and/of	
  his/her	
  comments	
  
confidential.	
  
	
  
Data	
  collected	
  during	
  this	
  study	
  will	
  be	
  secured	
  via	
  password	
  protection	
  on	
  the	
  primary	
  computer	
  
used	
  for	
  the	
  research	
  and	
  backed	
  up	
  on	
  a	
  secondary	
  password-­‐protected	
  computer	
  in	
  a	
  secondary	
  
location.	
  All	
  other	
  research	
  will	
  be	
  stored	
  in	
  a	
  locked	
  filing	
  cabinet	
  in	
  a	
  secured	
  location.	
  A	
  complete	
  
set	
  of	
  all	
  original	
  research	
  will	
  be	
  retained	
  by	
  the	
  principal	
  investigators	
  for	
  a	
  period	
  of	
  five	
  (5	
  
years)	
  from	
  the	
  date	
  of	
  publication	
  results	
  based	
  on	
  the	
  data	
  as	
  per	
  policy	
  ECUAD	
  Policy	
  5.1.1	
  p.	
  3	
  
after	
  which	
  time	
  it	
  will	
  be	
  disposed.	
  	
  
	
  
	
  
VOLUNTARY	
  PARTICIPATION	
  
Participation	
  in	
  this	
  study	
  is	
  voluntary.	
  If	
  you	
  wish,	
  you	
  may	
  decline	
  to	
  answer	
  any	
  questions	
  or	
  
participate	
  in	
  any	
  component	
  of	
  the	
  study.	
  Further,	
  you	
  may	
  decide	
  to	
  withdraw	
  from	
  this	
  study	
  at	
  
any	
  time	
  and	
  you	
  may	
  do	
  so	
  without	
  any	
  penalty	
  or	
  loss	
  of	
  benefits	
  to	
  which	
  you	
  are	
  entitled.	
  	
  
	
  
	
  
PUBLICATION	
  OF	
  RESULTS	
  
Results	
  of	
  this	
  study	
  may	
  be	
  published	
  in	
  reports,	
  professional	
  and	
  scholarly	
  journals,	
  students	
  
theses,	
  and/or	
  presentations	
  to	
  conferences	
  and	
  colloquia.	
  In	
  any	
  publication,	
  data	
  will	
  be	
  
presented	
  in	
  aggregate	
  forms.	
  Quotations	
  from	
  interviews	
  will	
  not	
  be	
  attributed	
  to	
  you	
  without	
  
your	
  permission.	
  Images	
  of	
  you	
  will	
  not	
  be	
  published	
  without	
  your	
  permission.	
  	
  
	
  
Feedback	
  about	
  this	
  study	
  will	
  be	
  available	
  upon	
  your	
  request.	
  All	
  participants	
  will	
  be	
  invited	
  to	
  the	
  
graduate	
  exhibition	
  and	
  the	
  thesis	
  defense.	
  In	
  addition,	
  a	
  package	
  of	
  the	
  results	
  will	
  be	
  complied	
  
and	
  digitally	
  given	
  to	
  each	
  participant	
  at	
  their	
  request.	
  Each	
  participant	
  will	
  be	
  made	
  aware	
  that	
  
they	
  will	
  have	
  access	
  to	
  said	
  digital	
  package.	
  You	
  may	
  contact	
  me	
  directly	
  to	
  obtain	
  further	
  

	
  

54	
  

information	
  on	
  the	
  results	
  of	
  the	
  study.	
  	
  
	
  
	
  
CONTACT	
  INFORMATION	
  AND	
  ETHICS	
  CLEARANCE	
  
	
  
If	
  you	
  have	
  any	
  questions	
  about	
  this	
  study	
  or	
  require	
  further	
  information,	
  please	
  contact	
  the	
  
Principal	
  Investigator	
  or	
  the	
  Faculty	
  Supervisor	
  (where	
  applicable)	
  using	
  the	
  contact	
  information	
  
provided	
  above.	
  This	
  study	
  has	
  been	
  reviewed	
  and	
  received	
  ethics	
  clearance	
  through	
  the	
  Research	
  
Ethics	
  Board	
  at	
  the	
  Emily	
  Carr	
  University	
  of	
  Art	
  and	
  Design	
  ECU-­‐REB	
  File	
  #2011051203.	
  If	
  you	
  have	
  
any	
  comments	
  or	
  concerns,	
  please	
  contact	
  REB	
  Assistant,	
  Lois	
  Klassen	
  at	
  ethics@ecuad.ca	
  
	
  
	
  
	
  
	
  
	
  
CONSENT	
  FORM	
  
	
  
I	
  agree	
  to	
  participate	
  in	
  this	
  study	
  described	
  above.	
  I	
  have	
  made	
  this	
  decision	
  based	
  on	
  the	
  
information	
  I	
  have	
  read	
  in	
  the	
  Information-­‐Consent	
  Letter.	
  I	
  have	
  had	
  the	
  opportunity	
  to	
  receive	
  
any	
  additional	
  details	
  I	
  wanted	
  about	
  the	
  study	
  and	
  understand	
  that	
  I	
  may	
  ask	
  questions	
  in	
  the	
  
future.	
  I	
  understand	
  that	
  I	
  may	
  withdraw	
  this	
  consent	
  at	
  any	
  time.	
  	
  
	
  
	
  
Name:	
  	
   	
  ______________________________________________________________________________________	
  
	
  	
  
	
  
Signature:	
  ____________________________________________________Date:	
  ___________________________	
  
	
  
	
  
	
  
	
  
Thank	
  you	
  for	
  your	
  assistance	
  in	
  this	
  project.	
  Please	
  keep	
  a	
  copy	
  of	
  this	
  form	
  for	
  your	
  records.	
  
	
  
	
  
	
  
	
  
	
  
Research	
  Ethics	
  Board	
  Approval	
  #	
  2011051203	
  
Sogol	
  Assadbeigi	
  
Emily	
  Carr	
  University	
  of	
  Art	
  +	
  Design	
  
Contact	
  Information	
  	
  
sassadbeigi@ecuad.caAppendix	
  	
  

	
  

55	
  

	
  
B.	
  Digital	
  Image	
  and	
  Audio	
  Release	
  Agreement	
  	
  
	
  
	
  
Date:	
  November	
  1,	
  2011	
  
	
  
Can	
  an	
  integrated	
  communication	
  platform	
  help	
  prepare	
  and	
  support	
  a	
  patient	
  advocate	
  for	
  
a	
  better	
  care	
  providing	
  experience?	
  
	
  
The	
  purpose	
  of	
  this	
  study	
  is	
  to	
  investigate	
  ways	
  to	
  alleviate	
  unnecessary	
  stress	
  experienced	
  by	
  
patient	
  advocates	
  through	
  design	
  tools	
  in	
  a	
  hospital	
  setting.	
  Interviews	
  with	
  professional	
  hospital	
  
personnel	
  along	
  with	
  co-­‐creation	
  workshops	
  aim	
  to	
  foster	
  a	
  better	
  understanding	
  and	
  appreciation	
  
of	
  the	
  needs	
  of	
  patient	
  advocates.	
  Results	
  will	
  inform	
  the	
  development	
  of	
  a	
  web,	
  mobile	
  app,	
  and	
  
way-­‐finding	
  support	
  system	
  that	
  aims	
  to	
  support	
  the	
  patient	
  advocate	
  in	
  caring	
  for	
  their	
  patient	
  
with	
  the	
  hospital	
  system.	
  	
  
	
  
	
  
In	
  signing	
  this	
  release	
  it	
  is	
  my	
  understanding	
  that	
  the	
  material	
  is	
  to	
  be	
  used	
  solely	
  for	
  educational	
  
purposes	
  and	
  that	
  the	
  major	
  outcome	
  will	
  be	
  public	
  critique	
  of	
  the	
  final	
  project.	
  The	
  critique	
  will	
  
involve	
  members	
  of	
  the	
  University	
  community.	
  I	
  understand	
  the	
  risks	
  and	
  contributions	
  of	
  my	
  
participation	
  in	
  this	
  project	
  and	
  agree	
  to	
  participate.	
  I	
  agree	
  to	
  allow	
  use	
  of	
  images,	
  clips	
  of	
  video	
  
footage	
  and/or	
  audio	
  clips	
  for	
  documentation	
  and	
  display	
  of	
  the	
  project	
  results	
  as	
  identified	
  below.	
  
I	
  understand	
  that	
  the	
  material	
  may	
  be	
  used	
  in	
  the	
  Emily	
  Carr	
  University	
  of	
  Art	
  and	
  Design	
  Website,	
  
future	
  academic	
  papers,	
  thesis	
  report,	
  case	
  study	
  reports,	
  and	
  thesis	
  presentations.	
  Furthermore,	
  I	
  
understand	
  that	
  the	
  images	
  and	
  video	
  footage	
  will	
  be	
  identified	
  by	
  the	
  workshop	
  phase,	
  and	
  
location,	
  and	
  that	
  the	
  names	
  of	
  participants,	
  including	
  mine,	
  may	
  be	
  used	
  in	
  the	
  documentation	
  of	
  
the	
  interviews	
  and	
  workshops.	
  
	
  
	
  
Please	
  check	
  all	
  that	
  apply:	
  
	
  
ANONYMITY	
  -­‐	
  	
  
0	
  Yes,	
  I	
  consent	
  to	
  the	
  inclusion	
  of	
  my	
  identity	
  (name)	
  in	
  all	
  documentation	
  and	
  publications	
  
0	
  No,	
  I	
  do	
  not	
  consent	
  to	
  the	
  inclusion	
  of	
  my	
  identity	
  (name)	
  in	
  all	
  documentation	
  and	
  publications.	
  
I	
  choose	
  to	
  remain	
  anonymous.	
  
	
  
DIRECT	
  QUOTATIONS	
  -­‐	
  	
  
0	
  Yes,	
  I	
  consent	
  to	
  being	
  quoted	
  in	
  all	
  documentation	
  and	
  publications	
  	
  
0	
  No,	
  I	
  do	
  not	
  consent	
  to	
  being	
  quoted	
  in	
  the	
  documentation	
  and	
  publications	
  
	
  
IMAGES	
  AND	
  RECORDINGS	
  OF	
  ME	
  OR	
  OF	
  MY	
  PROPERTY	
  -­‐	
  
0	
  Yes,	
  I	
  consent	
  to	
  the	
  use	
  of	
  digital	
  images	
  (photos	
  or	
  video)	
  or	
  audio	
  recordings	
  taken	
  during	
  the	
  

	
  

56	
  

research	
  user	
  trials	
  to	
  be	
  used	
  for	
  research	
  and	
  publication	
  purposes.	
  
0	
  No,	
  I	
  do	
  not	
  consent	
  to	
  the	
  digital	
  images	
  (photos	
  or	
  videos)	
  or	
  audio	
  recordings	
  taken	
  during	
  the	
  
research	
  user	
  trials	
  to	
  be	
  used	
  for	
  research	
  and	
  publication	
  purposes.	
  
	
  
0	
  Yes,	
  I	
  consent	
  to	
  my	
  photo	
  being	
  published	
  in	
  any	
  of	
  the	
  final	
  publications	
  	
  
0	
  No,	
  I	
  do	
  not	
  consent	
  to	
  my	
  photo	
  being	
  published	
  in	
  any	
  of	
  the	
  final	
  publications	
  	
  
	
  
0	
  Yes,	
  I	
  consent	
  to	
  my	
  photo	
  being	
  converted	
  to	
  a	
  line	
  drawing,	
  with	
  all	
  personal	
  identifiers	
  
removed,	
  as	
  seen	
  in	
  the	
  example	
  provided	
  below.	
  
0	
  No,	
  I	
  do	
  not	
  consent	
  to	
  my	
  photo	
  being	
  converted	
  to	
  a	
  line	
  drawing,	
  with	
  all	
  personal	
  identifiers	
  
removed,	
  as	
  seen	
  in	
  the	
  example	
  provided	
  below.	
  
	
  
	
  	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
	
  
I	
  will	
  indemnify	
  and	
  hold	
  the	
  student,	
  and	
  the	
  University,	
  and	
  its	
  employees	
  safe	
  and	
  harmless	
  
against	
  any	
  legal	
  prosecution	
  or	
  suit	
  arising	
  from	
  or	
  prompted	
  by	
  the	
  use	
  of	
  all	
  or	
  any	
  portion	
  of	
  the	
  
material	
  in	
  which	
  I	
  am	
  quoted	
  or	
  appear.	
  	
  
I	
  am	
  signing	
  this	
  release	
  freely	
  and	
  voluntarily	
  and	
  in	
  executing	
  this	
  release	
  do	
  not	
  rely	
  on	
  any	
  
inducements,	
  promises	
  or	
  representations	
  made	
  by	
  said	
  student	
  or	
  Emily	
  Carr	
  University	
  of	
  Art	
  and	
  
Design.	
  
Name:_____________________________________________Date:_______________________________	
  
Signature:_____________________________________________________________________________	
  
Witness	
  Name:______________________________________Date:_______________________________	
  
Signature:_____________________________________________________________________________	
  
	
  
Thank	
  you	
  for	
  your	
  participation.	
  	
  
Research	
  Ethics	
  Board	
  Approval	
  #	
  2011051203	
  

	
  

57